\^
S. Hrg. 103-1008
END OF UFE ISSUES AND IMPLEMENTATION OF
ADVANCE DIRECTIVE UNDER HEALTH CARE
REFORM
Y 4.F 49: S. HRG, 103-1008
End of Life Issues ind Inplenentati.
HEARING
BEFORE THE
COMMITTEE ON FINANCE
UNITED STATES SENATE
ONE HUNDRED THIRD CONGRESS
SECOND SESSION
MAY 5, 1994
'■• "^-^Wf
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Printed for the use of the Committee on Finance
U.S. GOVERNMENT PRINTING OFFICE
85-568— CC WASHINGTON : 1994
For sale by the U.S. Government Printing Office
Superintendent of DociiinL-nts. Congressional Sales Office, Washington, DC 20402
ISBN 0-16-046916-3
p
S. Hrg. 103-1008
END OF UFE ISSUES AND IMPLEMENTATION OF
ADVANCE DIRECTIVES UNDER HEALTH CARE
REFORM
Y 4. F 49: S. HRG, 103-1008
End of Life Issues and Inplenentati.
HEARING
BEFORE THE
COMMITTEE ON FINANCE
UNITED STATES SENATE
ONE HUNDRED THIRD CONGRESS
SECOND SESSION
MAY 5, 1994
/ ms
Printed for the use of the Committee on Finance
U.S. GOVERNMENT PRINTING OFFICE
85-568— CC WASHINGTON : 1994
Tor sale by the U.S. Go\cnimeni Printing Office
Superintendent of Documents, Congressional Sales Office, Washington, DC 20402
ISBN 0-16-046916-3
COMMITTEE ON FINANCE
DANIEL PATRICK MOYNIHAN, New York, Chairman
MAX BAUCUS, Montana
DAVID L. BOREN, Oklahoma
BILL BRADLEY. New Jersey
GEORGE J. MITCHELL, Maine
DAVID PRYOR, Arkansas
DONALD W. RIEGLE, Jr., Michigan
JOHN D. ROCKEFELLER IV, West Virginia
TOM DASCHLE, South Dakota
JOHN B. BREAUX, Louisiana
KENT CONRAD, North Dakota
BOB PACKWOOD, Oregon
BOB DOLE, Kansas
WILLIAM V. ROTH, Jr., Delaware
JOHN C. DANFORTH, Missouri
JOHN H. CHAFEE, Rhode Island
DAVE DURENBERGER, Minnesota
CHARLES E. GRASSLEY, Iowa
ORRIN G. HATCH, Utah
MALCOLM WALLOP, Wyoming
Lawrence OT)onnell, Jr., Staff Director
LiNDY L. Paull, Minority Staff Director and Chief Counsel
(II)
CONTENTS
OPENING STATEMENTS
Page
Moynihan, Hon. Daniel Patrick, a U.S. Senatx)r from New York, chairman.
Committee on Finance 1
Danforth, Hon. John C, a U.S. Senator from Missouri 2
COMMITTEE PRESS RELEASE
Finance Committee Sets Hearing on Health Care at the End of Life 1
PUBLIC WITNESSES
Cassel, Christine K., M.D., chief, section of general internal medicine, direc-
tor. Center on Aging, Health, and Society, director. Center for Health
Policy Research, and professor of medicine. University of Chicago, Chicago,
IL 5
Cassell, Eric J., M.D., clinical professor of public health, Cornell University
Medical College, and member, board of directors, the Hastings Center,
New York, NY 9
Emanuel, Ezekiel J., M.D., Ph.D., medical oncologist, Dana-Farber Cancer
Institute, and assistant professor of medicine, Harvard Medical School,
Boston, MA 11
Konner, Melvin M.D., Ph.D., Samuel Candler Dobbs Professor of Anthropol-
ogy, and associate professor of psychiatry and neurology, Emory University,
Atlanta, GA 16
Lynn, Joanne, M.D., professor of medicine, and of community and family
medicine, Dartmouth Medical School, Hanover, NH 18
ALPHABETICAL LISTING AND APPENDIX MATERIAL SUBMITTED
Cassel, Christine K., M.D.:
Testimony 5
Prepared statement 47
Cassell, Eric J., M.D.:
Testimony 9
Prepared statement 50
Danforth, Hon. John C:
Opening statement 2
Emanuel, Ezekiel J., M.D., Ph.D.:
Testimony 11
Prepared statement 54
Konner, Melvin M.D., Ph.D.:
Testimony 16
Prepared statement 67
Lynn, Joanne, M.D.:
Testimony 18
Prepared statement 72
Moynihan, Hon. Daniel Patrick:
Opening statement 1
(III)
IV
Page
Communications
American Bar Association 76
Annenberg Washington Program and the American Association of Critical-
Care Nurses 82
English, David M 86
Mezey, Mathy, et al 99
END OF LIFE ISSUES AND IMPLEMENTATION
OF ADVANCE DIRECTIVES UNDER HEALTH
CARE REFORM
THURSDAY, MAY 5, 1994
U.S. Senate,
Committee on Finance,
Washington, DC.
The hearing was convened, pursuant to notice, at 10:00 a.m., in
room SD-215, Dirksen Senate Office Building, Hon. Daniel Patrick
Moynihan (chairman of the committee) presiding.
Also present: Senators Rockefeller, Conrad, Dole, Danforth,
Chafee, Durenberger, and Grassley.
[The press release announcing the hearing follows:]
[Press Release No. H-32, May 4, 1994]
Finance Committee Sets Hearing on Health Care at the End of Life
Washington, DC — Senator Daniel Patrick Moynihan (D-NY), Chairman of the
Senate Committee on Finance, announced today that the Committee will continue
its examination of health care issues with a hearing on health care at the end of
life and implementation of advance directives such as living wills.
The hearing will begin at 10:00 A.M. on Thursday, May 5, 1994, in room SD-215
of the Dirksen Senate Office Building.
"Most medical care is received at the end of one's life," Senator Moynihan said
in announcing the hearing. "Often such care involves very expensive and invasive
procedures. The Committee will examine questions as to the appropriateness of ag-
gressive treatments that have little chance of success for dying patients, and the ef-
ficacy of living wills."
OPENING STATEMENT OF HON. DANIEL PATRICK MOYNIHAN,
A U.S. SENATOR FROM NEW YORK, CHAIRMAN, COMMITTEE
ON FINANCE
The Chairman. A very good morning to our most distinguished
panel and to our most welcome guests. This is the latest in the se-
quence of hearings on health care issues which the Committee on
Finance has been conducting for the better part of a year now.
In this instance we return to a subject which has been of great
concern to a number of Senators and in particular to Senator Dan-
forth. We have held hearings in the previous Congress, we have
considered legislation, and we continue to do so with the extra em-
phasis that we are going to have some general health care legisla-
tion this year. There ought to be a place in it for the issues that
Senator Danforth terms the end of life issues. This is something
that has concerned us in a whole manner of ways, not the least is
the extraordinary advances in technology that keep intruding on
(1)
what had been thought to be a life span, such that the issue has
been hugely transformed in the course of a single generation.
There is not a day goes by we do not encounter some phenome-
non on which we would not have been able to compose a sentence
very effectively 30 years ago, but one reads this morning that sev-
eral doctors have determined what precise form of cancer Hubert
Humphrey died from, simply by analyzing a urine sample that has
been preserved from 20 years past.
I mean that sort of technology just did not exist. Now it does. It
has consequences. We are here to learn from some very experienced
and learned practitioners what advice they have for us.
Might I say on a happy note that Senator Packwood is in Oregon
today for the wedding of his daughter and will not be in attend-
ance, but will be attentive to what the record shows.
Good morning to you all. The Republican Leader is here and as
is the courtesy of the committee we would like to ask if you would
like to make an opening statement.
Senator Dole. No, I do not have a statement. I just walked in
and I said, gee, I do not see anybody in the hall. They said, well,
lobbyists are not concerned with dying. [Laughter.]
Senator Dole. So I came on in anyway.
The Chairman. It was you who named it Gucci Gulch and not
without reason.
As I observed. Senator Danforth has had a particular interest in
this matter. Senator Danforth?
OPENING STATEMENT OF HON. JOHN C. DANFORTH, A U.S.
SENATOR FROM MISSOURI
Senator Danforth. Mr. Chairman, thank you very much for
holding this hearing. We have had a long series of hearings on var-
ious aspects of health care under your chairmanship and I do not
think that any series of hearings on this general subject of health
care would be complete without getting into the whole issue of the
end of life problem.
In 1990, Mr. Chairman, with your co-sponsorship the Congress
enacted the Patient Self-Determination Act. And the theory of the
Patient Self-Determination Act was very simple. It is that with the
advances in technology there are going to be more and more cir-
cumstances where it will be possible to keep people going, breath-
ing and yet not in a position where they can think or speak or
make decisions.
Often times people are kept going under these circumstances in
a condition which they would never choose for themselves. It is a
basic right. It is recognized in every State in the union that if a
person does not want a kind of medical treatment, then that person
cannot be treated against his or her will.
In fact, it would give rise to a lawsuit to treat somebody against
that person's stated will. It will be a common law battery. So a per-
son who is conscious and a person who is able to make a statement
can just say to the medical professionals do not treat me. But a
person who is comatose cannot say such a thing.
So we have this situation now where people who are comatose
can be kept going under circumstances which they would never
have permitted for themselves. They would have said no, it is un-
thinkable. It is totally unthinkable to treat me that way. Do not
do it. But they did not think about it. And they were involved m,
say, a car wreck and their brains are gone; and yet they are kept
alive.
So we have had these dreadful situations. Several of them hap-
pen to have been in my State, which have been litigated where the
families and have tried to stop it and there is no basis for stopping
it. So we got into the issue, you and I, Mr. Chairman, and back in
the 1990 the Patient Self-Determination Act was passed and it was
a very simple premise. It did not force anybody to do anything, ex-
cept that it asked the hospitals, it did require the hospitals and the
health care providers, to give people information when they
checked into the hospital that they had a right to make their wish-
es known in advance of getting in a position where they can no
longer convey their wishes. That was the Patient Self— Determina-
tion Act.
It said simply that when you check in the hospital you are sim-
ply given the information. That you can execute a living will or you
can provide a durable Power of Attorney so that people can make
decisions for you if you are no longer able to make them yourself.
This legislation was very largely the work of a wonderful staff
person in my office at that time named Liz McCloskey. She is now
raising her two sons and working for an organization that deals in
questions of medical ethics. But she really conceived of this idea
and had the perseverance to get it through the legislative process.
All of the indications that I have had from the hospitals is that
it really is a terrific blessing to have this, that it really has worked
very well, not perfectly. There are questions as to when people
should be given this information. I mean, obviously there are prob-
lems when somebody is admitted to a hospital and given a stack
of forms.
And if a person is in desperate condition and you are giving a
person a form while on the gurney, I mean, that clearly is a prob-
lem. Maybe there are better ways of providing the information. But
the basic point is to create the knowledge that people have this
kind of decision that they can make for themselves.
There are a lot of organizations that have been active in trying
to provide this knowledge in addition to the form that is made
available under the Patient Self — Determination Act — an organiza-
tion called Choice in Dying, the American Association of Retired
Persons, the American Bar Association's Commission on Legal
Problems for the Elderly, the American Hospital Association, the
American Medical Association, the people who are here today.
All of these organizations and individuals have been very instru-
mental in creating the kind of public attention so that people know
that this is their right and it is something that they can do. And
it, in fact, is a fairly simple matter to do it.
So the point of this hearing is to find out how the patient Self-
Determination Act is working, how it can be improved, and also
what I would like to get into is a question that you and I, Mr.
Chairman, and Dr. Marks of Memorial Sloan-Kettering spoke
about a couple of weeks ago — that is whether there is any possibil-
ity on a more systematic basis of dialogue between patients and
their physicians.
Because it is one thing to be given a form, but the health care
people, doctors, are trained to keep people alive. Sometimes they do
not do a terribly good job of really communicating the real choices
that are available to human beings.
So one thing that I would appreciate hearing from the panel is
the views of the people present today as to what, if anything, could
be done to encourage real communications.
I know that Dr. Marks sent me, in fact, the forms that are used
at Memorial Sloan-Kettering. One of the forms that they already
use is a very simple acknowledgement of discussion between pa-
tients and physicians, just a little simple one-page piece of paper.
The Chairman. Why do we not place that in the record?
Senator Danforth. All right. I appreciate that and that will be
submitted for the record.
[The information follows:]
[SAMPLE OF PATIENT ACKNOWLEDGEMENT OF DISCUSSION l
I have discussed with my physician, my diagnosis, prognosis and treatment options. My
physician has communicated the expected risks and benefits of my treatment options to me
and the advantages and disadvantages of the proposed plan of care. I have been given the
opportunity to ask questions about all of the foregoing and my questions have been
answered satisfactorily.
Signature of Patient or Agent Date Signature of Physician
I choose not to discuss my diagnosis, prognosis or treatment options and hereby designaje
the person named below to have these discussions, on my behalf, with my physician.
Name of Person Designated as Agent:
Signature of Patient Signature of Witness (over the age of 18)
Senator Danforth. So, again, Mr. Chairman, I appreciate all of
the members of the panel for being here, their work on this subject,
and your holding the hearing.
The Chairman. Thank you, Senator Danforth.
Senator Grassley?
Senator Grassley. Mr. Chairman, no opening statement.
The Chairman. Good. There will be no flashing hghts up here.
We might ask our panelists to be fairly concise so that we can ask
questions, which is what we are here for. We are here to learn and
we are very happy to have you.
We will start with Dr. Cassel, who is the Professor of Medicine
at the University of Chicago and Director of the Center on Aging,
Health and Society.
All statements will be placed in the record as if read. Just pro-
ceed exactly as you wish.
STATEMENT OF CHRISTDSfE K. CASSEL, M.D., CHIEF, SECTION
OF GENERAL INTERNAL MEDICINE, DIRECTOR, CENTER ON
AGING, HEALTH, AND SOCIETY, DIRECTOR, CENTER FOR
HEALTH POLICY RESEARCH, AND PROFESSOR OF MEDI-
CINE, UNIVERSITY OF CHICAGO, CHICAGO, IL
Dr. Cassel. Thank you. Senator Moynihan, and members of the
committee. I would like to say in spite of the absence of lobbyists
in the hallway, I think this is probably one of the most important
issues that you face, particularly in the context of health care re-
form.
I have been asked to present an overview of what some of those
issues are and some of the specific aspects of those will be gone
into in more detail by some others on the panel.
I am Chief of the Section of General Internal Medicine at the
University of Chicago and am also Chairman of the Health and
Public Policy Committee of the American College of Physicians and
a member of the Board of Directors of the American Board of Inter-
nal Medicine.
So in these various capacities I am aware that this issue is an
issue whose time has come. I think the passage of the patient Self-
Determination Act began and was one of the many events that
started to get people in medicine as well as people in public policy
to take this issue seriously. It has been too long neglected.
Some examples of what I mean. Just within the past year the
American Board of Internal Medicine has constituted a committee
to define the areas of clinical competence that it will require of
residents in internal medicine around the care of dying patients.
They have never done that before. So this is a new set of require-
ments for internal medicine trainees.
The Institute of Medicine just completed a feasibility study in
which they recommended a major research program about the
quality of care and the process of decision making around the end
of life. I was asked last week to chair a project on the policy dimen-
sions of improving the care of terminally ill patients that will be
launched by the Millbank Fund in New York.
It seems to me that these are indications that major groups con-
cerned with medicine and health care are turning their attention
to this area. So it is very timely. The entire nation learned an im-
portant lesson about this from former-President Richard Nixon two
weeks ago.
As his last days were reported in the press, it was one of the
most important efforts in public education about what death with
dignity can mean. It was widely known that President Nixon had
a living will, that he did not want heroic measures if his life was
not going to be meaningful on his own terms. He was never placed
on a ventilator and when his heart did stop beating, no resuscita-
tion was attempted.
So this was an important example, I think, that really all of
America looked to. Unfortunately, there are many and increasing
numbers of people who would prefer to exit this world with the
same kind of dignity that President Nixon did, but somehow the
system prevents this from happening.
As we move into an era of health care reform, we have an oppor-
tunity to improve this situation. This requires widespread changes
in medical practice, in medical education and training and in
health care financing.
Dr. Lewis Thomas, who preceded Dr. Marks as President of the
Memorial Sloan-Kettering Cancer Research Center, and was a
noted author on medicine in society also died this year. And he was
one of many who eloquently pointed out that progress of medical
technology in medical science has led to a culture of medicine
where the death of a patient is seen as a failure, a personal and
professional failure of the physician, leading to attempts, often fu-
tile attempts, which are made to prolong life in the face of common
sense evidence that these attempts are futile.
And in the process, and this is what I think we really ought to
concentrate on, patient suffer needlessly pain, discomfort and fear.
The health care environment is part of society. So it is the result
not only of the culture within medicine but also the culture within
which we all live, where there is a great deal of denial of mortality,
denial of aging, and I think an overly strong belief in the miracles
that modern medicine can produce.
It is also the case that patients too often are made to feel that
their only choice in the face of critical illness is intensive care or
abandonment. And, indeed, in most of our major hospitals we do
not offer a real alternative. We do not offer comfort care in every
sense of that word.
What we should instead offer is something like what the hospice
movement has done so well. But unfortunately hospice has not in-
filtrated the mainstream of medical practice. It is still the case that
the majority of people die in hospitals, in nursing homes, where it
is rare that true hospice care is being delivered.
So I think some requirements for optimal care at the end of life
include the following. One, that medical professionals understand
the limits of medicine and learn to view death when it is appro-
priate as an inevitable and personally meaningful chapter in the
life of their patients.
Second, that the knowledge of the principles and scientific basis
of palliative medicine be widespread among physicians and nurses.
Palliative medicine is indeed a medical specialty focused on comfort
care and relief of suffering rather than on the prolongation of life.
We have made important steps at limiting the use of unwanted
and unnecessary medical technology at the end of life. But that is
only the first step. We have a much more in some ways difficult
and important job in providing adequate comfort care to those pa-
tients.
Hospitals, including emergency rooms and nursing homes should
be structured to make this kind of palliative care available to a pa-
tient wherever he or she may be. It should not be necessary, for
example, to transfer a patient to hospice in order to get this kind
of care. You ought to be able to do it everywhere.
And related to this reimbursement for services should not be de-
pendent on acute curative care being offered, which is too often
now the case. The hospitals will say, we cannot afford to provide
comfort care because it is not reimbursed.
I think to deliver on the promise of the Patient Self — Determina-
tion Act we should emphasize the necessity for primary care physi-
cians to be the major source of this communication between doctor
and patient about end of life care. It is, in fact, as Senator Dan-
forth said, not the optimal time to have this conversation when you
are first coming in to an acute care hospital.
So as we think about health care reform, we must not construct
a situation in which the doctor/patient relationship is going to be
disrupted, for example as employers change plans 1 year or an-
other and then destroys the continuity in which that relationship
is so important.
A couple of suggestions in terms of health care reform along
these lines. One, payment for health care services needs to be flexi-
ble enough to allow palliative care to occur wherever the patient
is being cared for. We also need to put in place numbers of ways
to reenforce this need for better training and understanding of pal-
liative medicine.
Federal initiatives could help here, for example, to encourage and
examine innovative approaches to the delivery of end of life care,
to the measurement of quality of care at the end of life which we
now do very little of and then to the clinical use of those measures
so that patients know what they should expect as they die.
We need much more extensive training of physicians, especially
those in primary care, in both the science and the art of palliative
medicine and we need to encourage hospitals and physicians to talk
more openly about death and dying and the approaches to setting
limits on life sustaining treatment.
Here I want to make two final points. The physician needs to be
comfortable taking back some of the burden of decision making on
his or her own shoulders. As I have traveled in Europe, in Scan-
dinavia, for example, where they have a very good health care sys-
tem and spend a lot of money on it, but they do not use all this
unneeded and unwarranted technology at the end of life.
If you ask one of the physicians about how do they make these
decisions, they will say, well, it is just common sense. So there is
a sense that the physician has and exercises some common sense
judgment in interacting with the patient about these.
I think that the tremendously adversarial environment that the
current malpractice crisis in our profession has created makes
American physicians want to get a contract from their patients. So
they turn the whole decision over to the family or the patient,
which then makes the family feel like it is their fault that the pa-
tient died, rather than the more comforting notion of a physician
who is brave enough to put her arm around somebody's shoulder
and say, medical science cannot keep your mother alive much
longer, but she will not suffer and we will take good care of her.
8
This would be much more comforting to famiUes and I think
much more keeping in the traditional and important role that phy-
sicians can offer.
Finally, let me just say a few words about this brave new world
of managed care, which most health care reform initiatives are
heading towards and which even as we speak health care itself is
changing to, regardless of what happens with health care reform,
I think.
Now I am a big fan of managed care. I think prepaid approaches
to health care have been shown to be ways of providing more com-
prehensive services with more accountability for cost containment
in areas where they have had long experience with this, where
there are stable and large organizations. But that still is not most
of the United States.
As we move into what will be a new world for most health care
providers in the United States, we need to be cautious and aware
of the tremendous differences in the ethical context that managed
care presents to the physician. The traditional role of the physician
is to do whatever is the right thing for the patient regardless of
cost.
All too often it has been easier to substitute more ineffective
technology for the much tougher task of sitting down and really
facing the limits with the patient and their family.
Now that we are putting an additional responsibility in front of
the patient, the fiduciary responsibility of practicing medicine pru-
dently in order to conserve resources for all the beneficiaries in
that plan, we still do not have an ethical and legal environment
which really supports the physician in doing that.
So I think this is not an insoluble problem, but requires that we
explicitly define these new rules that we are asking physicians to
take and support them with some clear standards and relief again
from unnecessary legal threats.
So in conclusion I want to point out perhaps something which is
obvious, which is that the end of life is something all of us will
face, and, therefore, interest in improving the quality of care at this
time is not the province of any particular interest group, any par-
ticular medical specialty or any particular disease advocates.
Every aspect of our health care system, including medical edu-
cation and training, structures of systems of care and approaches
to financing and reimbursement, as well as the agendas of our re-
search institutions ought to be included in this vitally important ef-
fort.
Thank you.
The Chairman. Thank you, Doctor. That was hugely helpful. We
have come upon this question of the changed sets of incentives that
managed care brings about in ways that are not always reassuring.
We appreciate your term, palliative medicine.
We have got to deal with this. You have given us a context in
which to think about malpractice that I do not think we have had,
this adversarial culture which is associated with this subject, which
is a new one.
[The prepared statement of Dr. Cassel appears in the appendix.]
The Chairman. And now. Dr. Eric Cassell, a good friend. Profes-
sor of Public Health at Cornell University and a member of the
Board of Directors of the Hastings Center in New York, who comes
to us in both capacities. We welcome you, Doctor.
STATEMENT OF ERIC J. CASSELL, M.D., CLINICAL PROFESSOR
OF PUBLIC HEALTH, CORNELL UNIVERSITY MEDICAL COL-
LEGE, AND MEMBER, BOARD OF DIRECTORS, THE HASTINGS
CENTER, NEW YORK, NY
Dr. Cassell. Thank you, Mr. Chairman, Senator Danforth. I did
testify 30 years ago in the Senate in a, if you will excuse the ex-
pression, previous incarnation and at that time
The Chairman. Well, would you define that? [Laughter.]
Dr. Cassell. It was in air pollution in those days and the halls
were also empty. But look what happened in the 30 years that
have followed that. So although the halls may be empty now, I
think that what we are talking about brings us to a changing un-
derstanding of medicine.
We are at an ultimate of high technology, high specialty medi-
cine. We are beginning to see a change, however. That is really
what underlines one of the things we are talking about. What
brings it to the floor is the fact that there are three groups of pa-
tients in the United States who die nothing less than bad deaths.
One group is patients who are inappropriately resuscitated and
maintained on life support. Those are people who would have died
without the resuscitation anyway. Their disease is progressive. Re-
suscitation offers them nothing except to extend their dying.
The second group of patients are those with late stage dementias,
like Alzheimers Disease, and the inevitable physical decline that
comes with that disease. They enter hospitals unable to talk to
anybody, to make contact, to interact and are treated for one infec-
tion after another until they finally peter out, d3dng a death that
no one would choose for themselves — no one would choose for them-
selves.
And the final group are patients who die suffering in pain,
unrelieved pain and other symptoms from diseases — cancer is the
one we talk about the most, but it is not the only one — and whose
care is inadequate for what their problem is.
Now the first two groups, people who are inappropriately resusci-
tated and the end stage dementias, the problem with their deaths
could be or can be resolved in part by advanced directives. When
the Patient Self — Determination Act came along, I, along with a lot
of other people thought this is the push we needed. This is going
to make a huge difference. Unfortunately it has not made as big
a difference as we wanted it to.
Patients are coming onto the floors of the New York Hospital,
unlike Mr. Nixon, they do not all have advanced directives and
that piece of paper that they get as they come in the front door is
one of 100 other pieces of paper and it is too often not signed.
Now there are some reasons for this — why they do not tell us
what they do not want done and why they do not tell us who
should speak for them when they no longer have a voice. For one
thing, there is inertia, inevitable inertia. There is apathy. They
have other things on their mind. They are indifferent to this con-
cern. They are also frightened, like people who do not write wills
because they do not want to talk about death in the first place and
10
they do not want to consider their death coming into a hospital, so
they do not want to sign a document that appears to be a document
directed only at their death.
There are lack of incentives. There are ways of making people do
things that they otherwise would not do and there are some direct
incentives. I just might say one of them — that if Medicare reim-
bursed physicians for the visit in which an advanced directive is
signed and that had a code, we would have more advanced direc-
tives signed.
There is ignorance by both physicians and patients about what
this whole thing is really about. There are administrative difficul-
ties. In the New York Hospital, as I say, the piece of paper is pre-
sented as part of the admission procedure. It ought to be on the
chart. It ought to be in the front of the chart. And it ought to stay
on the front of that chart until it is either signed or declined and
so it has impact.
But there is one final thing that gets in the way, and that is the
wrong idea of what an advanced directive should do. I would like
to concentrate on that if I could for the moment.
The widespread idea that people have is, and it is a wrong one,
that an advance directive is meant to exercise the patient's right
to refuse treatment. As we know, this started out in the age where
autonomy was coming up as a major issue — patient's autonomy —
in the face of an aggressive and imperialistic medicine so that it
looked like the thing to do was to be able to refuse treatment.
Doctors pursue disease and hold off death at all costs, grinding
patients under their goals and patients defend themselves by exer-
cising their right to refuse treatment. Well, that is a strange pic-
ture of the care of the sick, that there is an aggressive doctor here
and you defend yourself unless you happen to be lucky enough to
have shared goals.
And despite the fact that I have exaggerated somewhat to make
the point, it is too often true. I think we must change the focus of
our advanced directives from refusing treatment to choosing treat-
ment.
The purpose of an advanced directive is to move away from an
adversarial stance between patients and doctors to an active in-
volvement of the physician with the patient on the patient's mak-
ing a choice about what is important to that patient in his or her
care. Not merely if they are going to die, but in any case.
Now we say the patient chooses their treatment when they can
and they have a voice. But we really want their doctor and them
involved at all times in the evolution of care. People die and so in
choosing treatment we are also choosing how we want to die. It
should be something over which we have considerable choice.
The ability to do it is there. It is not really either advanced tech-
nological medicine or palliative care. They are all part of a seam-
less continuum of medicine when medicine is practiced to meet the
needs of sick persons.
What kind of an end of life best meets the patients needs, as the
patient knows those needs, is a concern of physicians and patients
together. It requires an enhanced relationship between doctor and
patient. It requires a shift in the orientation of the physician from
11
a primary concern with diseases and technology to a primary con-
cern with sick persons.
Whatever health care law is enacted in relationship to any aspect
of health care, even patient self-direction — I mean patient's ad-
vanced directive — has an impact on the doctor/patient relationship.
It either encourages it or it discourages it. There is no neutral
stance.
It is only by a return to the historical basis of medicine — that the
relationship between doctor and patient — that we can help patients
make meaningful choices and make physicians aware of their re-
sponsibilities for the quality of living as well as the quality of
dying.
Only here will we be able to resolve the third kind of bad death,
a death of suffering, and again make appropriate care of the d3dng
and relief of suffering one of the fundamental goals of medicine.
Thank you.
[The prepared statement of Dr. Cassell appears in the appendix.]
The Chairman. We thank you. Dr. Cassell, most emphatically.
The notion that the advance directive needs to shift from being
seen as a matter of refusing treatment to a matter of choosing it
is very helpful, at least to this Senator. I appreciate that very
much.
We welcome Senator Chafee this morning.
Dr. Ezekiel Emanuel is a Medical Oncologist at the Dana-Farber
Cancer Institute and a Professor of Medicine at Harvard Medical
School. We welcome you. Doctor.
STATEMENT OF EZEKIEL J. EMANUEL, M.D., PH.D., MEDICAL
ONCOLOGIST, DANA-FARBER CANCER INSTITUTE, AND AS-
SISTANT PROFESSOR OF MEDICINE, HARVARD MEDICAL
SCHOOL, BOSTON, MA
Dr. Emanuel. Thank you, Mr. Chairman. Thank you. Senators,
for having me. I am an oncologist and I take care of mainly breast
cancer patients. I am also a medical ethicist. Last spring I worked
as an ethicist on President Clinton's health care task force and
have been interested in the area of advanced directives for about
the last 8 or 10 years, and with my wife created The Medical Direc-
tive, which is a kind of advanced care directive that combines pre-
cisely the wishes of whether you actually want treatment and prox-
ies.
I am going to talk to you today for a moment about the wide-
spread perception in our society on the part of doctors, health pol-
icymakers, the media, the public, may I even say Senators, that
were spending too much money on the care of dying patients. We
find this view almost everywhere.
Recently there was an Op. Editorial in the Washington Post enti-
tled "Final Savings from Living Wills," which promulgated this
idea.
I want to ask first the question, where does this perception come
from. I think it rests on three ideas. The first idea is from very
good data from the Medicare system provided by HCFA that
shows — and it is actually illustrated on this poster here — that
around 5 percent of Medicare beneficiaries each year die. Those 5
percent consume about 27 percent of the Medicare budget.
12
That proportion has stayed the same from 1976 to 1988. 1988,
by the way, is the last year for which we have statistics available.
That is 6 years ago.
The Chairman. That is a stable ratio, is it not?
Dr. Emanuel. Yes. And actually, that ratio can be shown to
project back into the early 1960's — the same ratio.
So it appears that we are spending a huge amount of money on
the care of dying patients. Second, it is claimed that the vast ma-
jority of Americans do not want aggressive end of life care. They
would rather refuse treatments, just as President Nixon did.
We, like many of the people at this table, have conducted a num-
ber of studies of patients and the general public and have substan-
tiated that when asked 73 percent of patients and members of the
public did not want a respirator at the end of life and 74 percent
did not want artificial feeding and nutrition at the end of life.
If you portray the most extreme scenarios, if patients are in a
persistent vegetated state, the number goes to 80 percent who do
not want these aggressive treatments. Thus, many people take a
look at that 28 percent and they say, well, 70 percent of people do
not want aggressive treatments. Well, 27 percent of the health care
budget this year is around $230 billion. If we assume we can save
70 percent of that, maybe we can save about $110 billion on end
of life care.
Such calculations have been made. They have been made by phy-
sicians in the literature and, dare I say, they have been made by
senior advisers to our President who have been quoted and I have
heard make such statements.
The Chairman. We have heard that, too, actually.
Dr. Emanuel. Are these estimates true? And do they reflect re-
ality? I want to suggest for three reasons I do not think they are
true. In fact, I do not think we are actually spending that much
on health care at the end of life.
The first point I would make to you is that while the Medicare
data is very good data, it distorts reality. Five percent of the Medi-
care beneficiaries die each year. But in America only 2.2 million or
so people die each year, less than 1 percent of the population dies.
It is highly unlikely that that 1 percent is going to consume 27
percent of the whole national health care budget. As a matter of
fact, our calculations, which are on the high end, suggest that
dying patients in America consume only around 10 percent of the
total national health care expenditures.
As a matter of fact, the HCFA data, the people I have talked
with in HCFA, suggest that it may be lower, at 7 or 8 percent. I
think the reason we have that distortion is because two-thirds of
people who die in America die on Medicare. So there are very few
other people dying.
Second, the idea that most Americans want to refuse treatment
I think is true. But we cannot extrapolate the data so easily. For
one thing we know as a result of many studies now that despite
the fact that there has been a lot of media publicity to advance care
directives, despite the fact that they are widely available, despite
the fact that you now have to get them in hospitals, despite the
fact that they are cheap, only around 25 percent of Americans have
ever completed an advanced care directive.
13
Indeed, as I think Dr. Cassell has mentioned, there are enormous
barriers, not just practical, but actually psychological, for complet-
ing advance care directives. When you consider that only half of
Americans have ever filled out a regular estate will, you can realize
what the barriers are.
More importantly I think, we need to remember that from survey
after survey roughly 20 percent of Americans want everything done
for them no matter what. They are very committed to getting ev-
erything modern medicine has to offer, even at the end of life.
There are also important segments of our population who want
lots of medical treatment. AIDS patients, very costly patients, rep-
resent such a group. Many surveys have shown that around 50 per-
cent of AIDS patients want ever5dhing done, including intensive
care units, if in fact they still have a low chance of survival.
I was recently reading my alumni book from Amherst College
and happened to look at an obituary of a classmate of mine from
the Class of 1979 who died of AIDS. Here is what it said. "He told
his family he wanted them to take whatever measures were avail-
able to sustain his life. He told me he felt robbed of the virus and
refused to succumb. Until the very end, he stubbornly clung to life
and tried to hang on as long as possible".
I am sure he does not represent a majority of Americans. But I
am sure he does represent a significant minority. That is one rea-
son again that we cannot necessarily reduce medical care costs at
the end of life.
Finally, I want to suggest the idea that we can save a lot of
money through the use of advanced directives, hospice and other
things does not have a lot of empirical support.
If you can flip to the third poster there. I have summarized on
this poster for you many of the recent studies about the use of ad-
vanced directives and hospice to save money. In the top panel are
the three studies that exist about saving money through advanced
care directives. The first one is from California. The second one is
from five places around the country; and the third one is from
Philadelphia.
The first two suggest that you cannot save any money from
greater use of advanced care directives. And, in fact, the very first
one looked not just at the final hospitalization but the last 6
months of life and suggested that there was not a significant
amount of money to be saved by patients who used advanced care
directives in California.
The last one is the most recent study that showed we could save
68 percent, but they were looking at only the terminal hospitaliza-
tion. I do not think any of these studies are definitive. I do not be-
lieve that they show you can save anything. But I do think
The Chairman. That last one is Chambers, 474 Medicare pa-
tients in Philadelphia.
Dr. Emanuel. Correct. Over 3 years.
But I think the important point is, it is not obvious you can save
a lot of money. I think that they suggest there is less to be saved
than we believe.
Another place that we have good data on is in the whole area of
hospice care. That is the bottom panel here. In the early 1980's
14
there was a big push before Medicare fully covered hospice to study
the use of hospice in this country.
There was a VA study which randomized patients either to hos-
pice or not, patients who had cancer. It showed that you could not
save any money by using home hospice. Then there was a very big
national hospice study between 1980 and 1983 in cooperation with
the HCFA and the Robert Wood Johnson Foundation and it showed
that in the last month of life you could save 40 percent by having
people in hospice.
But as people stayed in hospice longer and longer the savings de-
creased, such that in the last 6 months of life you could only save
27 percent of the end of life care cost by using hospice.
Now I would remind you of current statistics. In 1992 now the
average length of stay of a Medicare patient on hospice has risen
to 57 days. That is about the break even point.
Also importantly, more than a quarter of patients on hospice still
require hospitalization for treatment of complications and other
problems.
In addition to these studies there are other studies among cancer
patients, for example, showing that if you give patients with meta-
static lung cancer either chemotherapy or best supportive care and
no chemotherapy, you do not save a whole lot of money either. So
I think the idea that we are going to save a lot of money is doubt-
ful.
I have made sort of a wild estimate of how much could we save
if every American executed an advanced directive, every American
accepted palliative care in hospice and wanted to die at home rath-
er than get aggressive care. That is the next panel.
I am not going to go through the details of it, since as you might
imagine there are a lot of assumptions and complicated calcula-
tions. But we can show, I think, that assuming you can save 27
percent of the health care dollar by using these services, the most
you are going to save is 3.3 percent of health care spending and
6 percent of Medicare.
From one perspective these figures might seem trivial, fi-om an-
other perspective they represent $30 billion. And dare I say in the
Everett Dirksen Building, I should not trivialize a few billion dol-
lars here and a few billion dollars there.
But the fact of the matter is that it is highly dubious all Ameri-
cans are going to use those interventions — living wills and hospice.
More importantly, as I am sure you appreciate, you cannot flip a
switch, such that tomorrow we can collect the $30 billion. It will
dribble in over time and it to actually get it represents a huge shift
in the practice of American care. Probably a shift that would re-
quire almost a decade to accomplish.
Finally, let me address myself to why I think the total savings
are probably less than we anticipate. First, I want to reemphasize
the point that Medicare gives us an inflated view of how much we
are actually spending on the dying people. If we spend 10 percent
of national health care expenditures on dying patients we simply
cannot save that much on such a small percentage.
Second, and very importantly, I want to emphasize to you that
we already are doing a lot to stop aggressive end of life care. Many
studies can show you now that 80 percent of Americans who die
15
in big hospitals do not get resuscitated anymore. And if it is cancer
patients we are talking about, a recent study from the Cleveland
Clinic demonstrates that 97% of patients do not get resuscitated at
the end of life.
Doctors in the last 10 years have had a dramatic shift in the way
they treat patients. Importantly, I also think if you found other sta-
tistics, we are withdrawing a lot of other treatments, not just
cardiopulmonary resuscitation. The idea that we do everything, I
think, is old. It is certainly a decade out of date.
Fourth, I would emphasize that we cannot predict who is going
to die. So it is hard to decide from which patients we should with-
draw care. Until the very last moments.
The only cases where we really have good predictability are can-
cer and AIDS, but they account for only about a quarter of all
deaths. That means three-quarters of the dying patients we do not
have an ability to predict when the death will occur with any preci-
sion.
Who would have known that Richard Nixon would have died in
April 1994? It might have been 1995. It might have been 1996. If
some illness would have come up, would we have withheld treat-
ment from him?
Finally, I want to emphasize one very, very important point. We
talk about palliative care. Even if we stop aggressive end of life
care it does not mean the patient immediately dies and we do not
provide good medical care. Providing good palliative care is still ex-
pensive. It is labor intensive. You need to provide someone who
turns a patient, who can adjust the pain medications, maybe gives
them radiation therapy to a painful bone metastasis or other
things. That kind of care is not cheap.
If we are going to urge doctors to provide high quality end of life
care then we have to recognize it does not come for free, even if
it is not high tech. Therefore, I think we are not going to save near-
ly as much on this to finance universal coverage as many people
would anticipate. I do not think there is nearly as much waste in
the system as we might believe.
Thank you.
The Chairman. Thank you. Dr. Emanuel.
[The prepared statement of Dr. Emanuel appears in the appen-
dix.]
The Chairman. Once again, to say, as Dr. Cassel observed, that
nothing has been more emphatic in our hearings than the repeated
reports of how medicine is changing right before us. To some extent
we have to watch that we do not repair a system that no longer
exists. But that has happened before.
Welcome, Senator Rockefeller. It is good to see you here.
Senator ROCKEFELLER. Thank you, Mr. Chairman.
The Chairman. Dr. Melvin Konner is one of those, I dare not say
over educated, but superbly educated persons, who is both a profes-
sor
Dr. Konner. Over educated is fine.
The Chairman. A Professor of Anthropology and of Psychiatry
and Neurology at Emory University, an absorbing and rare com-
bination. We welcome you, Dr. Konner.
16
STATEMENT OF MELVIN KONNER, M.D., PH.D., SAMUEL CAN-
DLER DOBBS PROFESSOR OF ANTHROPOLOGY, AND ASSOCI-
ATE PROFESSOR OF PSYCHIATRY AND NEUROLOGY, EMORY
UNIVERSITY, ATLANTA, GA
Dr. KONNER. Thank you very much. It is a privilege to be here.
My name is Melvin Konner and I hold Ph.D. and M.D. degrees. To
my mother's disappointment, I do not practice medicine but teach
and write about medicine in society. I sympathize with the practic-
ing physician, but I get no part of my income from the delivery of
care.
Due to several serious illnesses in my family I also know how it
feels to be at the other end of the stethoscope.
Robert Frost is known for many serious works, but my favorite
may be the following two-line poem. "Forgive oh Lord my little
jokes on thee and I will forgive thy great big one on me." The big
joke is mortality. And although the almighty may sometimes find
it funny, we humans rarely do. In fact, we spend our lives in a
massive effort to postpone them in denial.
Certainly in medicine the assault on mortality is our mission, ob-
session and dream. But what happens when we have so much con-
trol that the idea of natural order loses its meaning?
There is agreement that competent adults may refuse treatment
and a growing acceptance of advanced directives. Activists have
tried to extend patient rights to encompass a right to die and even
a right to a physician's help in dying.
A series of average Americans, most recently this week, have re-
fused to punish such acts when they seem human. And only yester-
day a Federal Judge in Washington State ruled a ban on assisted
suicide unconstitutional.
But as Dr. Christine Cassel has said, it is one thing to let people
die because their lives are an inconvenience to them. Quite another
to let them die because they are an inconvenience to us. Surely we
do not want to create a moral realm in which seriously ill people,
guilty over the burden they cause, choose death when life still ap-
peals to them.
Dr. Carlos Gomez studied youth in Asia in the Netherlands and
found inadequate treatment of pain and depression. Before we help
people die we had better be sure we have done enough to help
them want to live. Yet, a rational fatally ill person may choose
death and leaders of medicine recognize that assisted suicide does
and probably should sometimes happen.
We owe it to physicians, patients and families to share the bur-
den of this secret. But the ethics of the ice flow also evokes the
specter of explicit rationing. Nobody wants it, but in fact we have
rationing now.
The Chairman. Did we hear you sir? The ethics of the ice flow.
Dr. Konner. The ethics of the ice flow, yes.
Nobody wants rationing, but in fact we have rationing now. As
a medical student in some of our Nation's best hospitals, I saw it
in action as poor people waited in pain for so many hours that they
left without treatment.
We saw rationing, too, when thousands of children contracted
measles in a completely unnecessary epidemic a few years ago and
17
some died of it because of the shameful inadequacy of our vaccina-
tion programs. This is simply irrational rationing.
We accept the process of triage and war or disaster when we
must choose whom we will treat. We may be facing triage as a na-
tion. Americans say that we spend too much on health, yet 35 mil-
lion people have been left out.
The people of Oregon have tried to set priorities and a bipartisan
plan designed by physician legislators after countless town meet-
ings and with the Governor's support, they ranked medical treat-
ments by value and effectiveness. They did not find this easy, nor
did they think they had done it perfectly. They can be criticized for
singling out people on Medicaid, but their plan should be studied
by all who care about health.
If we set priorities, how do we view the end of life. To focus on
the last year misses the point in two ways. First, there are wasted
treatments throughout life. Tens of thousands of unwarranted coro-
nary bypasses, hysterectomies, prostatectomies, caesarean sections,
the list goes on. These treatments may be wanted but that does not
make them good medicine and the money they waste is drawn fi-om
other needed treatments.
Second, the last year does not exhaust the end of life issues. Con-
sider my mother's final illness. A large stroke left her bedridden
and unable to speak. She had made it clear that she would not
want to live in such a condition. Still, we fought to give her every
chance of recovery. But after a second stroke we faced a sad choice.
Specialists wanted to implant a gastric feeding tube. Her family
doctor, a friend, advised against it. It could have kept her alive for
years in a very grim condition. We knew what she would have
wanted. No tubes she had said again and again. Still, we agonized
about it and even consulted a lawyer. We decided not to place the
tube and her doctor discharged her to hospice care at home where
she died gently a few weeks later.
With the tube she might have survived for years of indignity and
distress without hope of improvement. She would have also in-
curred many medical expenses, most of which would not have been
in the last year of her life. But.of course, we were not trying to save
money.
Indeed, while we were aiming for recovery, we spent Medicare's
money with impunity and so I hope with everyone. I call this the
what if it is your mother rule.
As awareness of new technology spreads, the what if it is your
mother rule will continue to drive up costs. Only a broad social con-
sensus eventually embodied in law can slow down this process. Not
all treatments of patients demand have equal value and some have
none. Courts have ordered hospitals to provide against their best
judgment expensive treatments with no proven merit in a vain at-
tempt to control what cannot be controlled. We sorely need more
and better outcome studies to give us practice guidelines.
If we do not set priorities, then our effort for denial of death will
come back to haunt our children as they struggle to find the values
that we lack the courage to bequeath them.
The Chairman. Thank you very much. Dr. Konner.
[The prepared statement of Dr. Konner appears in the appendix.]
18
The Chairman. That was very moving. Of course, we are not
going to change the advance of that technology, are we?
Dr. KONNER. Certainly not.
The Chairman. Although that is one of the dilemmas we deal
with. We will get to that in general questioning.
Dr. Lynn, good morning. Professor Joanne Lynn, a Professor of
Medicine at the Dartmouth Medical School. We welcome you.
Dr. Lynn. Thank you.
The Chairman. I think I am going to ask that those somewhat
intimidating charts be taken away. They seem from the perspective
of the camera and the light — no, we will do it for you — we do not
want to have you sitting there with those charts glaring at you.
Good morning.
STATEMENT OF JOANNE LYNN, M.D., PROFESSOR OF MEDI-
CINE, AND OF COMMUNITY AND FAMILY MEDICINE, DART-
MOUTH MEDICAL SCHOOL, HANOVER, NH
Dr. Lynn. Good morning. Much to the surprise of most Ameri-
cans, dying is not optional. It is the one minority group to which
we can all aspire — to be very old, very sick, and dying. And not
only that, we will mostly get the chance. It is the case that most
of us who are alive long enough to be in this room will spend time
seriously ill with an illness that will eventuate in our death. The
major success of modern medicine can be said to be the creation of
serious chronic disease eventuating in death, but later — not at the
time when it would have killed us in an earlier era.
The usual person dying of illness in the United States faces an
extraordinarily high likelihood of dying in pain, alone, isolated, at
great expense, devoid of meaningfulness, without grace or dignity.
My background in this regard arises mainly from having been a
physician to some 2,000 patients who have died, mostly in this city.
I was the main hospice physician for Washington, D.C. for more
than a dozen years and I have served a number of patients in nurs-
ing homes and in home care. I also have worked a great deal with
ethics, having been a part of the President's Commission on Ethics
in Medicine when it was alive and well in the early 1980's, and I
have worked with a number of legal organizations in trying to work
on these issues.
It is striking that, at least in this arena, there are not adversar-
ial groups. We all can see where we ought to end up. The struggle
is, how can we get there? It is not really that there are parties in
opposition. This ought to give us tremendous opportunities for
achieving what we hope to achieve.
But we have a long history to live down. Modern medicine has
almost completely lost even basic descriptive knowledge of how it
is that we die. The last sequential study of dying patients in hos-
pitals was done by Sir William Osier at the turn of the centuiy.
You cannot say with any authority today how many people die in
a hospital. Although I have helped create some of the estimates, it
is still the case that we do not have even that basic information.
We do not know how many people die unconscious, how many
people have seizures, how many have pain, how many have family
in attendance, how many are abandoned. The basic work of under-
19
standing what it is to die has been abandoned by modern medicine
and by the culture that modern medicine serves.
If you look at a textbook of modern medicine at the turn of the
century, you will find virtually every disease described in its gory
detail through to death, with advice to the practitioner as to how
they will recognize that things are getting worse and what small
things can be done to try to assuage the pain and suffering that
is thereby entailed.
In a modern medical textbook you are lucky to find acknowledge-
ment that the disease vdll eventuate in death. You can go hun-
dreds of pages in descriptions of congestive heart failure or cancer
without noting that these are the diseases that take most of us.
That sort of reorientation is going to take substantial sea change
in how it is that we view ourselves, our lives, and our lives coming
to a close. People routinely think that doctors know how to prog-
nosticate, how to assuage pain, and generally how to serve dying
persons. Nothing could be farther from the truth.
This culture has been so thoroughly death-denying that we have
not even described our course to death, nor have we developed the
professional skills to provide service to these patients. It is prob-
ably true that we are gradually learning how to forego inflicting
unjustified technology upon dying persons, but we clearly do not
know how to see to it that most of us — and most of our parents —
will get excellent care shaped to our needs and responsive to our
s5rmptoms.
The care system that we have developed has serious barriers to
adequate care of the dying. Reimbursement is not regularly avail-
able for services that merely mitigate suffering. An automatic de-
nial of a hospital stay happens if you are not doing something more
aggressive than merely to have somebody be comfortable. And yet
that is, after all, what one most hopes for as one comes close to
dying.
Even hospice is really available only to the middle class with
solid cancers and predictable courses to death. It is not regularly
available to the poor, the homeless, persons without adequate
wealth and families.
The usual person dying and in need is not in the same condition
as was probably the case in 1950 or 1955 when we really shaped
the current health care system. The usual patient is not the 55-
year-old male legislator who is worried about a heart attack. The
usual person dying now is an elderly person with multiple ill-
nesses, most commonly afraid of bankruptcy, most commonly vdth
very little family resources, with no regular physician who is fol-
lowing through to death, and whose fears are homelessness, hun-
ger, pain, and isolation, not the absence of access to coronary ar-
tery bypass grafts.
All of these terrors can be mitigated. We do know how to do this.
But doing so will require substantial reorientation of the care sys-
tem so that continuity and support become priorities. And to that
end, what is done in regard to the end of life must be integrated
completely into the reforms now being considered for the care sys-
tem as a whole.
In regard to the Patient Self-Determination Act, I think that the
Patient Self-Determination Act has done a great deal of good. I was
20
something of a skeptic at the time it was enacted. I think that, as
it has played itself out, it has done a great deal of good.
I want to review just briefly some of the things it has done. One
of the small provisions of the Act which has received very little at-
tention was that the Act required that States say what their law
was. Now that sounds fairly simple. It turned out to be enormously
complicated.
I brought along some examples of what Vermont did, for exam-
ple, in putting together an intelligible way of patients and doctors
understanding what it is they could and were free to do. And, in
doing that, cosortiums had to develop in every State, involving peo-
ple from quite diverse fields, who had to try to make sense of what
were ordinarily quite a disparate and incoherent set of statutes.
Thirty-three States enacted legislation to improve their statutes
out of that endeavor. Forty-eight States developed intelligible
consumer oriented information that is now in use in those States
to try to make clear what you can do with regard to medical deci-
sion making, including using advance directives, but not limited to
advance directives. That provision of the PSDA was stunningly ef-
fective and with very little cost.
There is perhaps a more checkered balance sheet in regard to the
mandatory notice. The centerpiece of the PSDA is that patients
must be told at various points as they come in and out of the
health care system about their opportunities to make advanced di-
rectives and to control their care.
In the support project, which I am one of the co — leaders of, we
have had the opportunity to study advanced directive use among
very seriously ill patients in five U.S. hospitals before and after im-
plementation of the PSDA. Before the PSDA about one in five of
our patients said they had an advanced directive. There were few
that were mentioned in the medical records — on the order of 80 out
of 400 — and there were none that were recorded in the medical
charts. Advance directives themselves — there were none at all.
After the PSDA, the proportion of patients who have an advance
directive has gone up almost not at all, only a very small amount.
But now one in three are mentioned in the records and almost all
of those actually have the document. Our experiences are echoed
in the work of others, who are finding many more advance direc-
tives showing up in the charts and being discussed there.
However, the evidence that advanced directives are changing
how patients are cared for is less clear. In support, we can find vir-
tually no effect of having a living will or a durable power of attor-
ney. You are equally as likely to have a "do not resuscitate" order
with or without one. You are equally likely to have the timing of
your "do not resuscitate" order at a certain date with or without
a durable power of attorney or a living will.
Even among patients who have living wills and who have ex-
pressed a preference not to be resuscitated, only half have an order
or a discussion of an order documented in the chart. So there is a
staggering inability of the care system still to deal with this issue.
We have patients who are very sick — in our study all the patients
are very sick and most will die within 6 months — and they have
a living will. Furthermore, they tell us in an interview that they
do not want to be resuscitated. Yet, the care system is only ad-
21
dressing that in less than half of the cases. So there are still miles
to go.
I think as Ezekiel has already said, the evidence that we have
a substantial effect on costs with advance directive is fairly small.
On the other hand, we are early in this process. This is a C change.
This requires a lot of changes down the line and maybe over time
we will really see some substantial effects. This is very early in the
process. There are lots of things yet to be done.
One of the more striking changes which may or may not have to
do with the Patient Self-Determination Act is the enormous in-
crease in do not resuscitate orders and in orders against hos-
pitalization in nursing homes. That may have as much to do with
the OBRA regulations requiring that those be documented. But in
either case, those have gone up enormously, on the order of tripling
in many States.
But advance directives have not delivered on the promise that we
thought they would have in 1990 of a blossoming affect of commu-
nication, a burgeoning of advanced care planning for seriously ill
patients and a curtailing of worthless and desired life prolonging
care for dying persons in hospitals.
Why is this? I think it is for three reasons. One is that most ad-
vance directives just say to do what it is you would already be
doing. That is, turning to the next of kin in the case of a durable
power of attorney or stopping at some point for almost everybody
else — and that is what almost everybody wants. In those cases you
would not expect an advanced directive to change much.
A second reason is that patients, doctors, and the patients' fami-
lies do not really understand when these should be used and have
the sense they should be used essentially as the patient is dying,
as their blood pressure is sinking, not two or 3 months or 6 months
or 2 years earlier when they really could have a substantial impact
on the shaping of a long plan of care.
This may have to do also with the fact that patients and families
especially do not understand prognosis. Even though they are
told — it is rather like the story of asking a lot of people whether
they are good drivers and how they would rate their driving. It
turns out that everybody in America is a better than average driv-
er. Well, if you ask people who are very sick how long they Eire
going to live, everybody thinks they have at least 90 percent chance
of making it to 2 months, even if they are likely to die this week.
So that is a really fiindamental change in how it is we come upon
our djdng to acknowledge that we are probably not greatly different
from the statistical mean and we probably are not all going to beat
the odds. Unless we get to the point of understanding that, some
of these things are not going to change dramatically.
A final consideration is that very few interventions are actually
being implemented that are really stupid anymore. We are down
to around 10 percent of people get a resuscitation tried as they die.
We are not having huge amounts of people kept in ICUs who have
no chance of successful treatment. Most Nancy Cruzans do have
their treatment stopped very early.
What should you do? What should we do about improving the
things that are yet to be improved? Well, that takes some careful
thought because it is not only a question of what should be done.
22
but what should be done at the Federal level. And so much of this
is the matter of changing 1,000 little things in the lives of doctors,
patients, nurses, hospitals. We have to be very careful as to where
it is we step in to shape the system so that we do not create more
problems than were there to begin with.
I think that the advent of managed care and of thinking system-
ically about health care creates a tremendous opening wedge for
improved care of the dying by simply requiring there to be meas-
ures of how well we are doing, and requiring a reporting of that.
Now we do not have those measures today but we could develop
those and we could require the regional health alliances or health
plans to know how they are doing. And those that are doing badly,
presumably, would be motivated to improve that.
We also could require that organizations like professional groups
and lOM, the Institute of Medicine, would generate guidelines on
what it is that is good care. And that might stand to help make
coherent what right now are very difficult, conflicting mandates at
the Federal level. For example, we are required to treat all persons
as if we are blind to disability and the fact of illness on the one
hand and on the other hand to notice that we are not doing very
much good at some level of disability if we drag out life for a little
longer.
That incoherent mandate needs to be brought together in very
concrete guidelines and a group like the Institute of Medicine or
perhaps leading professional groups could take a lead in that. But
they would have to be mandated to do so and given some learning
room. Because right now I as a practitioner do not know how I
should try to bring those together.
We could make Medicare Part A and graduate medical education
funds contingent upon better education of doctors at least in regard
to care of the dying. We could encourage innovations in Medicare
that would broaden the scope of potential services at the cost of re-
ducing aggressive care so that people could get services that are
tailored to that 85-year-old woman dying at home alone and scared
rather than a Medicare program which really was tailored to the
fears of people who were afraid they could not get hernias repaired
or cataracts extracted. That is the fear of most 65-year-olds, but it
is not the fear of most 85-year-olds. There probably ought to be an
innovative program under Medicare that would make that possible.
We could require that the institutes in the National Institutes of
Health that have under their purview the major killers actually
come to terms with that fact. They must support research on how
it is that one comes to die of heart disease, of lung disease, of liver
disease, of cancer and to present reports on how well we are doing
and what we could do to improve those rather than to treat the fact
of dying as an orphan phenomenon that we are going to continue
to ignore forever.
[The prepared statement of Joanne Lynn appears in the appen-
dix.]
The Chairman. Why do we not just take that as a healthy list
of suggestions and we will hold it right there. Listening to you I
thought will there emerge a national malaise called longing for
pneumonia. [Laughter.]
23
But your reference to Sir William Osier's compendium on dying
makes me think of Lewis Thomas a little earlier on the hundredth
anniversary of the first publication of the journal Science, which is
the Journal of the American Association for the Advancement of
Science.
They had a series of very brief articles on the big events of the
last century. Lewis Thomas had an article on medicine. It had as
its feature that wonderful portrait, which got the Victorian painter
knighted, called "The Doctor" by Sir Luke Filk. I think you all rec-
ognize it. You have seen it in calendars that pharmaceutical com-
panies send you.
The doctor is sitting there. He is bearded. He is intelligently
looking at this child who is sort of sprawled off the couch and in
the back you see a father and a mother hovering. And Thomas ex-
plains that that doctor almost certainly knows what is wrong with
that child and he knows exactly how the disease will progress. And
he also knows that there is nothing he can do about it and that
it took a century of medicine to get to that point.
What has changed in the interval is that now you can do some-
thing and that has produced the ailments for which you say we will
all expire. Whereas, formerly pneumonia came along rather briefly.
But that is the condition we are in and we are asked both to deal
with it and to legislate on it. We have had wonderful testimony.
I want to thank you all and turn now to the Republican Leader.
Senator Dole. Are these advanced directives portable or do you
have to make one in Kansas and one in Tennessee?
Dr. Lynn. They are probably portable in that they would be over-
whelmingly persuasive evidence of the patient's intent and it is ex-
ceedingly unlikely that anyone would fail to follow one that was
clear just because it did not meet the requirements of any one
State.
On the other hand, the state-to-state distinctions are really silly.
In one State you require a notary public and in another State two
witnesses. And sometimes the witnesses cannot be employees of
health care institutions and sometimes they can. You know, trying
to get through the morass of the small differences is really silly
and sometimes looks as if you cannot rely on it.
I think the ruling in Cruzan makes it fairly clear that courts
would rely on even a letter. For example, I write a letter to my
child. Courts would probably rely on it. But doctors might not be-
lieve that. And it would be a mercy for the providers of this country
if we were freely able to transport formal advance directives.
The Chairman. Dr. Konner is agreeing.
Dr. Konner. Yes. My experience is that today an advanced direc-
tive from another State would be more than most hospitals and
physicians would require to assume that they know what the pa-
tient's wishes were. Really the problem is with the great majority
of people who do not have advanced directives and for whom the
actual character of their wishes is very debatable.
Senator Dole. Could I ask Dr. Emanuel, I guess the point you
are making is not an economic issue. You are not suggesting it is
not a good idea.
Dr. Emanuel. Right. I have worked in this area for almost a dec-
ade now trying to improve the documents, trying to improve ways
24
for physicians and patients to communicate, trying to get legisla-
tion passed, trying to study how we use them.
So I think it is a fantastic idea. I spend a lot of my time cam-
paigning for greater use of advance care directives. But I think the
under current, which has risen closer to the surface over the last
few years is that advance care directives are also going to be a
great economic tool and I think that is a very sad mistake, both
because we are not likely to realize much savings and also because
I think it distorts their purpose.
I might mention that there are some consultants running around
advising insurance companies and HMOs to give a 5 percent dis-
count to anyone who fills out an advanced directive. I do not know
how they get the statistics on which to make such a recommenda-
tion. Nothing suggests that is anywhere near right. But you can
see that it has become much more material.
Senator Dole. Are there any statistics that
The Chairman. Five percent?
Dr. Emanuel. A 5 percent discount.
The Chairman. Well, Kaiser might be making money.
Dr. Lynn. It does select for the well off.
Senator Dole. Are there any statistics available on people who
might have an advanced directive or people who are comatose and
then suddenly one morning, you know, they are back on the road
to recovery? Does that happen very often? I mean we talk about
living wills and advanced directives. You just roll the dice and 99
percent of the time you are going to die anyway or what?
Dr. Cassell. Do you mean are there people who have an ad-
vanced directive, would withdraw treatment, and then one morning
would wake up and are alive again?
Senator Dole. Yes, get better. Does that happen very often?
Dr. Emanuel. We do not have good statistics on that.
Dr. Cassell. But the point is that prognosis is not a blind. You
do not have to look into a crystal ball to find out whether somebody
with advanced metastatic cancer is going to die. They are going to
die.
There are other conditions in which whether somebody is going
to die is doubtful — comatose, people who are comatose through ac-
cidents may, in fact, come back. But the vast majority of people
who die do not have a disease in which it all of a sudden reverses
itself. But it is brought up as an argument that supposing, just
supposing this person could live, well, that is interesting. But then
we have to ask how many other people are going to be subjected
to an awful lot of awful care in order that this one person might
1 day rise up out of their bed and come alive again.
So it is not only that one person might come back to life. It is
all the other people we treat wrongly or inadequately just so the
one might rise.
Dr. Emanuel. There are also some interesting stories about peo-
ple who did have an advanced directive, it was not known, they
were treated, they did recover and they resented having recovered
because they are left with some disabilities, because they had lived
out the life they wanted to and now they were not in the condition
they wanted.
25
You asked for statistics, statistics we do not have. But we do
have stories that it is not everyone's wish, as we know, to live ad
infinitum. Many people think they have lived a sufficient life and
enough is enough.
The Chairman. We have a rule in this committee which is that
data is the plural of anecdote. So you need not fear. [Laughter.]
Dr. Cassel.
Dr. Cassel. I just wanted to add to this that that is part; of what
I meant by the fact that we are always going to be dealing with
some degree of uncertainty. There is a movement in medical ethics
to search for perfect futility data so that we will know which treat-
ment or in which patients treatment will be 100 percent futile.
I think there are very few such arenas. Most of medicine is based
on probability. But the point is that when we talk about these
unpredicted recoveries, it is not that someone gets up and goes
back to the golf course. There are intermediate consequences which
I discuss with my patients when they face major surgery, for exam-
ple, at the age of 90 years old.
They are not worried about dying on the table. They are worried
about having a stroke during the operation and then surviving
with that. That is much more worrisome to them than the possible
risk that they might die.
So I think that is what we have to deal with. Remember, Karen
Ann Quinlan who is one of the first people who brought this to our
attention was thought to be certainly going to stop breathing when
her ventilator was stopped in 1976. She did not. She lived for eight
more years with a feeding tube in place.
Nancy Kruzan's parents thought that Nancy would not want
those additional years of life with the feeding tube. So it shows
that our ability to prognosticate is not perfect, nonetheless the
quality of that life is something that I think we can predict pretty
clearly.
Senator Dole. You would not compare this to what Kevorkian
does, right?
Dr. Cassel. Not what mostly we are talking about. I think Dr.
Konner did raise that issue. I think that one of the reasons there
is such tremendous public clamor for the right to assisted suicide
and assisted dying right now in this country is not because the ma-
jority of Americans want to commit suicide. That is not what they
are saying. What they are saying is, they are afi*aid to die in our
hospitals because they are afraid they will not be comforted and
they will not receive the kind of care that palliative medicine re-
quires.
Therefore, they want to have that option in case they should
need it. So I think the message to us as a health care system is
much more importantly to improve the quality of care.
Dr. Lynn. On the question of prognostication, may I jump in just
briefly?
Senator Dole. Yes, because I saw in your statement about how
doctors really do not know.
Dr. Lynn. Right. It is a very profound question and terribly im-
portant. I think it is an embarrassment to the body politic that we
managed to debate hospice with the prognosis at 6 months with no
one ever having pointed out how different the population could be
26
if we meant that 99 percent had to be dead at 6 months compared
to 50 percent at 6 months.
The elementary statistics of what it is we can do with data are
very poorly understood, even by doctors. Your question has a couple
of interesting ramifications, if I may explain just very briefly. If
you look at the very best studied populations, find those who die,
and look at what you could have prognosticated two weeks to four
weeks earlier you will have a middling prognosis — 50/50 of living
2 months.
Picking out the people who are almost certain to die can be done,
but selects a tiny population. Most of us a week or two before we
die will have something like a 50/50 prognosis of making it 2
months. Because our course to dying is rather like we are walking
a tightrope in a wind storm. You know you are going to fall off if
you go long enough but it is very hard to know exactly how far you
will get.
We really have to come to terms with that basic limitation of
what data can do for us. So I can tell you a population. Out of the
support project I can show you very good data that I can find a
population that has less than 1 percent chance of living for 2
months. It is 115 people out of 4,300 people, most of whom die
within a year. It is a tiny population for whom I could ever be that
precise.
The reverse is what you really want. You want to know, for those
people who die, how bad do they look two weeks earlier or four
weeks earlier so that we can change what we do for them.
Dr. Cassell. Thirty-three years of practicing medicine confirms
that you cannot know for sure when somebody is going to die. But
you must understand that prognosis is a process. If you are trying
to figure out how many people will be dead at day one, day five,
and you can only make one guess and you make it only today, you
stand a very, very good chance of being wrong a lot of times.
But if you understand you are watching the process of an illness
unfold and that the question is not will this person die a week from
Tuesday, although that may come up, the question is, what kind
of care do they need now so that this evolution of this disease al-
lows them to be who they are for the longest period of time and
what kind of resources have to go into that.
Prognosis is not just the moment of death, it is also will they re-
turn to the golf course, will they be an active participant in the
family, can they go back to work. For those things prognosis can
be done very well, if you understand it is always evolving over
time, that you get to correct like any course correction.
There are very few of us who are required to make the NASA
type of calculations. We get to correct our course as we go along.
If you do it that way,then prognosis becomes much, much more ac-
curate.
The Chairman. Thank you. Senator Dole.
Senator Danforth?
Senator Danforth. I want to thank all members of the panel
and first say to Dr. Emanuel I think that the end of life question
is both an important ethical question and an economic question.
But with respect to the issue of advanced directives, I have not
linked the two.
27
In other words, I would never argue for the Patient Self-Deter-
mination Act that we have to save the money and, therefore, it is
the duty of people to drop like leaves from the trees.
Dr. Emanuel. I never suggested you did. But it is in the air. We
have a former-Governor of Colorado and many other people making
such statements in and about this city and the country.
Senator Danforth. Right. But I mean my point is simply the
question of a person saying, here is what kind of treatment I want
and here is what kind of treatment I do not want. And anybody can
make that while conscious.
So the question is, well, how do you extend that capacity to make
a decision or to give some communication to the physician when a
person is no longer conscious. I just view the advanced directive
question as an extension of something that anybody can do in any
event. It just creates a mechanism for doing it.
So the Patient Self-Determination Act was really a mechanism to
aid a mechanism. It was really to say, here, let us inform people
that they can write a document and the document becomes a mech-
anism to express in advance what your wishes were if certain
events happened.
Dr. Cassel, when you communicate with patients, conscious pa-
tients, you tell them what you do, I guess, is you give them your
best judgment, based on all you know and your expertise as to
what is going to happen to them.
Dr. Cassel. That is right. And I also often, and maybe because
I work predominantly in geriatrics, I deal with a different cohort
of patients, but I find that the current mode of negotiating with the
patient, that is to say here are the list of things we could do, what
do you want us to do, does not work with someone who is 85 years
old. What they want to know is, what do I think, what is my advice
to them.
Now they may choose not to take that advice, but that is one of
the things they expect from a physician is to get a well-educated
piece of advice. So I feel that that is part of my responsibility to
them, even about these life and death issues.
Senator Danforth. Well, the point was made by Dr. Emanuel
and also by Dr. Lynn that the cases of hospitals and doctors doing
just crazy things is declining. It is not that heavy a percentage.
Dr. Cassel. It is declining. It is not gone though I would say.
Senator DANFORTH. But I take it that health care is not on a
purely mechanical basis. I mean, there are judgments to be made.
You are not on automatic pilot.
Dr. Cassel. Absolutely. I think that — and where I think some of
the most tragic mistakes happen is in the misinterpretation of the
notion of patient autonomy. As you pointed out, the advanced direc-
tive is an instrument to promote communication. It is not an end
in itself.
So, unfortunately, we have created a new problem in medical
care, especially in our academic centers, known as the unreason-
able family. The way that comes about is that a young physician
in training will go to a family of someone who is critically ill, per-
haps in the intensive care unit, and say, do you want us to do ev-
erything for your mother.
28
Well, now, who would not say yes? Right? I mean, what kind of
a son or daughter are you if you do not say yes? Then the resident
goes back to the attending physician and says this is a really un-
reasonable family, they want us to do everything.
So a lot of this has to do with communication skills and what
really are you saying to the family about what is possible and are
you presenting them with real choices. And unless we change the
culture of medicine so that those physicians can use the word death
in the presence of the family and say, you know, it is likely that
your mother is going to die and we can make her comfortable and
make sure that she does not suffer and that she will not be alone,
then you can start having that conversation.
But if instead you put it in this unrealistic choice framework,
then you are going to produce these demanding families.
Senator Danforth. But there are choices to be made?
Dr. Cassel. Often indeed there are choices along the way and
that is why you would like the family to be there with you as you
move along. As Eric said, the prognostication occurs over time. It
is not an all or nothing thing at one point.
Senator Danforth. Well, I want to ask Dr. Cassell because you
emphasized the patient/doctor communication, but is there some-
thing we should be doing that would encourage that? I mean, for
example, the Memorial Sloan-Kettering simple sheet which says
that when there is a change in the patient's condition, the patient
issues in health care is let us get out of the hair of physicians, they
should have less forms to fill out and people are filling out too
many forms now.
I have a daughter who is a hospice nurse. She tells me that half
of her time is spent filling out forms. I mean, that is clearly crazy.
We do not want to give people a lot of forms to fill out.
On the other hand, is there anything we could do or anything
systematically that could be done such as the Patient Self-Deter-
mination Act was designed to be a system to at least present deci-
sions to people. Is there anything systematic we could do to encour-
age physicians to talk to patients about these issues?
Dr. Cassell. I think there are. The problem of — I phrase it
somewhat differently. It is the resident who comes out and says,
is it all right if we kill your mother. What they actually say is, if
we do not put your mother on the respirator she will die. Should
we put your mother on the respirator? Which translates, should we
kill mom.
And, of course, at the moment then, of course, the family says,
well, we want full court press and all those funny words you hear.
But, in fact, you might say to the resident, this lady has been in
the hospital since a week ago Monday, how come nobody had this
discussion with the family and with her when she came in the hos-
pital. Well, we did not want to bring it up, we did not want to
frighten her and so forth.
Yes, I think you can make that document which you have al-
ready got in the law, can become part of the chart and the physi-
cian's responsibility, not the admitting office. The physician's re-
sponsibility to have the discussion and that the thing stays in the
chart from the beginning.
29
If you do that, then it is something that has to be worked out.
It is there. Now it is not another form. The form already sits there.
It is already in the hospital system. So that on the short term you
are requiring this as part of that patient's care — the discussion
about outcome.
So that is the first thing. The second thing, I think we can edu-
cate
Senator Danforth. So you would just require that something ap-
pear on the patient's chart one way or another?
Dr. Cassell. Yes, and that it be a part of the beginning of that
chart and does not move from the beginning until it has been dealt
with. It should actually stay there.
But the second thing is, one of the forces that makes for commu-
nication between doctors and patients is patients asking questions.
So I think that there ought to be as part of the act educational pro-
grams, just as we are now educating people about condoms when
nobody would have dreamed that that was going to be part of pub-
lic education before.
It might be just as reasonable that we educate people on an on-
going basis about end of life decisions, about the fact that they
have these rights that we should be discussing these matters with
their physicians, that they should not be waiting until the last
minute, that they are not being asked to say I want a respirator
or I do not want a respirator but what is important to me.
I tell people in lectures all the time. If I drop in front of you now,
if you do not believe that I am going to go out of your hospital able
to read and write or return to reading and writing, please stop
treating me. It is your problem how you do that.
Patients have to know that is part of the ongoing discussions.
They ask for pap smears. They can be asking for that. But to do
that, it has to be a continuous educational process. They have to
see the literature. They have to see the documents. They have to
become aware of it.
Senator Danforth. How do we do that?
Dr. Cassell. Well, how do we educate about breast cancer
screening and condoms and pap smears? HHS has educational pro-
grams. They have public service spot announcements that come on
television. It costs money but it is effective. And we have a very
knowledgeable patient population.
The days of there-there dear are gone. Our patients know a lot
about medicine. So we are trying to get them to know this about
medicine. This is part of medicine too, not merely drugs and treat-
ment.
Dr. Emanuel. Can I make three suggestions? First, many years
ago — six or so years ago — we had suggested
Senator Chafee. Many years ago? Six or seven?
Dr. Emanuel. Well, what Dr. Cassell had suggested in his testi-
mony, which is that you make discussing advanced care directives
a reimbursable office visit because it takes away the number of in-
centives that are against it. Right? If it takes time and I can't get
reimbursed for it as a physician, it is hard to do.
In addition to being economically difficult, it is a psychologically
difficult topic to raise with patients. I can assure you of that. It is
important to at least line up some of the incentives in the right di-
85-568 0-95-2
30
rection. I think making it a Medicare reimbursable issue is one
possibility.
Second, as I think has been suggested around the table, there is
a lot of control in this committee over education in medical schools,
by indirect and direct medical financing. It seems to me that more
emphasis on education in medical schools on these subjects is very
important.
I had not one single lecture, not one single minute in my medical
school training at Harvard Medical School about these issues. You
were sent in and you learned how to discuss dying and stopping
treatments by trial and error. It was baptism by fire, as much of
medical school still is. That is not very helpful. There are things
that can be taught before students get into patients rooms.
The third thing I would suggest is that a very important element
of this whole issue is continuity of care, having the same physician
treat the same patient over time. I have a great luxury. I have can-
cer patients who I follow from the diagnosis all the way until the
end. We develop a relationship over years and because it is cancer
it is very intense. I see them much more frequently than most pri-
mary care doctors see their patients.
I think when we consider health care reform we have to consider
how it is going to have an impact on the continuity of care. The
proposals, for example, of managed competition are likely to have
a very deleterious affect on continuity of care.
They encourage people to switch every year to the cheapest
health plan. We already know, for example, that people who switch
to HMOs have a much shorter time with the same physician, com-
pared to people who are in fee-for-service. We know also that Medi-
care people in this country, almost half of them have been with the
same doctor for 10 years. They have an enduring relationship.
That is very important for two reasons. First, it is important for
me as a doctor to feel comfortable to introduce the subject of end
of life care. Second of all, I see over time how the patient reacts
to a variety of health crises. So we have addressed the issue over
and over. I know the family. I know a lot about their decision mak-
ing.
If we have a system which is going to chop up this continuity of
care and make each patient go to a doctor for a year or 2 years and
then have to switch, I think we are going to disrupt more than any-
thing else the possibility of having a discussion about end of life
care over time.
I think probably the common theme from all of us, certainly in
our practice as doctors, is that continuity is a very critical issue to
end of life care decision making.
The Chairman. And you got on that task force?
Dr. Emanuel. This is one of the things I have written about and
argued with the White House. I kept saying that this disruption
was a very pernicious aspect of managed competition.
Senator Danforth. I have two more questions, Mr. Chairman,
but I will wait until everybody takes a turn.
The Chairman. Fine. Would you do that? Senator Rockefeller has
been very patient.
Senator Rockefeller. Thank you, Mr. Chairman.
31
I would address this, I guess, to anybody who wants to answer
it. The question of continuity of care, seeing the same person is a
very interesting point. Dr. Emanuel, you brought up managed com-
petition, HMOs already exist; managed care already exists. Man-
aged care can be invasive of continuity of physician if you are
forced to leave your physician to join a managed care plan.
Physicians sometimes are made nervous by expanded scope of
practice for nurses. I am interested in what part nurses and other
providers can plan in dealing with patients about these matters.
Physicians may usually be brought in at critical points and crisis
points but they may also be there at routine points. But nurses
have quite constant contact.
Dr. Emanuel. It depends on whether the decision making is
being made in the hospital or in the office.
Senator ROCKEFELLER. I am not talking about decision making.
I am talking about the evaluation, the evolution of judgment, avail-
able to the patient and to the caregivers.
The Chairman. That is a good point.
Dr. Lynn. There actually is some evidence out of our study on
the question of nurses. Nurses in the hospital know less about the
patient's preferences and desires than do their house staff and do
interns. So the image that just because nurses are there a lot, that
they know a lot is appealing but it is not very well borne out.
On the other hand, in working as I have done in home care and
long term and institutional long term care, it becomes very clear
that the doctor ought to be a relatively modest part of the health
care team and not the leader or the dominant force.
I think when it comes my time to be sick unto death, I am hop-
ing most for a very good nurse. You know, a very good nurse will
often know when a very good doctor will make a difference, will
have that doctor be much less a part of the care presence.
I think we need the opportunity to innovate more about what it
is that really must be done by physicians or must be done by
nurses or can be shared freely. For that matter, I would include in
that mix social workers and certain other kinds of therapists. And
a well functioning hospice team, I think we end up about 75 per-
cent cross — trained, so we often have nurses effectively telling me
exactly what I am supposed to order for medications and likewise
I know how to call in social supports and to get financial services
arranged for a patient.
So I think very good, well-functioning care teams will see that
doctor's incomes will go down, doctor's predominance will go down
relative at least to other parties in the system and that the impor-
tant roles that nurses especially can play will be very important in
the care of very seriously, chronically ill patients and dying persons
because of the skills that they mostly need.
Senator Rockefeller. At the risk of cutting other members off,
I only have five minutes and I want to ask others.
The Chairman. Jay, take all the time you need.
Senator ROCKEFELLER. Well, I want to ask a final question, be-
cause I think I already have a sense of what you would say. You
have given me both limits and scope in your answers.
Jack Danforth and I have discussed this question a number of
times. I remember a year-and-a-half ago when my mother died
32
from Alzheimers. In the last several weeks of her life when she de-
veloped pneumonia and her lungs were filling up with fluid, I and
my sisters went up to the New York Hospital.
I was fascinated. Maybe, Dr. Emanuel, you have spoken on this
already. The very first thing that the physician said to me was, I
do not want you to worry, and this was a rather young doctor. I
would say maybe late thirties or earlier forties. I trusted him.
There was an automatic chemistry.
He said, we have gotten very good at these things these days. I
do not want you to worry that we are going to over extend or try
to do too much. And it was in a sense almost as if he was predict-
ing my concern.
Now my mother had a living will which we actually did not dis-
cover until just a few days before her death. So this never came
into play. I was comforted by that. Then in returning I saw that
my mother was having suction tubes down her nose, in her mouth
and she was resisting. Of course, if you have Alzheimers you do not
think as well, but you can feel. So she would bite down upon those
tubes, at least the ones in her mouth.
It was very clear that she did not want to go on. It was very
clear to all of her siblings that we did not want that to happen. We
knew what her life had been like and we understood what she
wanted.
So we said basically that is enough. We took her home and we
started using morphine. The attending physician remained the
same attending physician. My mother was a strong woman, a big
woman. She did not respond to morphine, so the physician in-
creased the dosage of morphine.
I remember a series of discussions I had with the doctor in which
there were actual little beads of perspiration on his forehead as he
began to discuss with me concerns about cause and effect as inter-
preted by New York State law.
What I came to discover was that it was the siblings who really
took over the medical care and the physician in this case was kind
of the reluctant partner, in some cases made to relax by us rather
than the other way around. All of which brings me to the question
of the training of the physician and what you said about not a sin-
gle day.
How widespread is that? We have medical ethics being taught in
medical schools more now. There is a lot of writing on it. But you
still do not hear very much about it. I want to know what is hap-
pening and how do you teach something like that. What does a
course like that say?
Dr. Cassell. Well, at the New York Hospital we do not teach
communication between doctor and patient. It would have per-
mitted the physician coming up now to know how to have a discus-
sion about this subject with you or your family.
But the story you tell also makes it clear that we do not take
care of a patient. We take care of a patient and a family in an envi-
ronment. And knowledge that medicine is context related, that it
happens in this environment, is not a knowledge we teach. We
have expected doctoring to be learned by experience.
33
Well, as you point out, that is not adequate anymore. Doctoring
is too complex to learn just by experience. We do not ask pilots to
learn just by
The Chairman. You mean medical schools teach medicine and
doctoring is something else.
Dr. Cassell. We teach basic science, but. Now there are places
where this is starting. I mean, there are schools where there is be-
ginning to be teaching and some of it is quite good. But it is early
because the same kind of disciplined knowledge about what you are
talking about does not exist as exists for the liver. It is not that
it cannot. It is that it does not. We would have trouble getting ade-
quate funding again and again not to have discipline knowledge on
the same basis that we now have knowledge about molecular biol-
ogy-
So while there are starts and while we can find schools where
there is interesting and even very good things being done, the im-
pact on medicine, broadening the funding base for teaching this
kind of thing would be profound.
Dr. Cassel. But it is also true that we do know more than you
are giving us credit for. There is a huge and authoritative text-
book — the Oxford Textbook of Palliative Medicine. And yet what we
teach in medical schools is only curative medicine.
When the patient becomes sick enough to begin dying and when
we transfer that patient to hospice, the patient is transferred off
the teaching surface as if, and I have heard this said, there is noth-
ing more to learn from this. So it is almost as if when you stop try-
ing to prolong life, it is no longer important for the student or hos-
pice to learn this.
The Chairman. Could I just interrupt? Dr. Cassel, you mean that
the young medical interns leave that person who is going off to hos-
pice.
Dr. Cassel. Is less interested. That is right.
The Chairman. You are not going to learn anything there.
Dr. Cassel. And in some ways it is — to get to Senator Rocke-
feller's point, in some ways it is because of the curative culture of
medicine and our focus on the dramatic scientific advances. But it
is also because a lot of it, not all of it, but a lot of it is nursing
and that is undervalued and under appreciated, this team work
concept that is so essential to palliative medicine.
So, therefore, we assume, oh, this is something for the nurses to
do. This is not the doctor's business. And, of course, much of it is
essential. For example, the correct dose of morphine and under-
standing how to use that and other kinds of symptom control, as
well as the importance of this ongoing relationship.
Dr. Emanuel. Can I just make one brief observation? We have
no National Institutes of medical ethics and within the Cancer In-
stitute where you might expect a big research endeavor in pallia-
tive care since still about 40 percent of people who have cancer will
die of their cancer, we do not have such a significant endeavor.
You know, doctors are like many other people and they follow
some incentives. The idea that we are going to both generate im-
portant research so we understand this process and we train people
so that they can teach communication about these issues has not
yet happened.
34
I think if your question is how can the Senators in this commit-
tee room make an impact on this, I think the idea of persuading
the medical schools of this country who train our doctors that this
is a legitimate area for research and a legitimate area to get time
in the first 4 years of medical school, these national institutes are
a very powerful message, especially in this era when we are debat-
ing where medical education fiinds are going to come from and re-
search funds are going to come from. It is that simple.
Senator Rockefeller. Another very powerful tool is the $5.5 bil-
lion that comes from Medicare to medical education.
Dr. Emanuel. Right.
Senator Rockefeller. I am wondering out loud whether that is
something we ought to think about. Give a Federal directive that
medical schools need to develop ethical training or whatever the
word would be.
Dr. Cassel. Not just ethics, but the clinical care of the dying pa-
tient.
Senator Danforth. It is much more than ethics.
Senator ROCKEFELLER. Tell me what the word should be.
Dr. Cassell. If you make palliative care just another specialty
you will once again separate off the dying from the rest of people.
Dr. Cassel. No, you do not have to be dying to get comfort.
Dr. Emanuel. I think you need three areas — medical ethics, com-
munication skills and palliative care. I do not think that restricts
you only to the djdng, because you have emphasized communica-
tion and you have emphasized medical ethics which have wide
ranges. But it also does indicate that it is not just sort of broad
principles.
There are actually important skills that people can learn about
how to communicate more effectively and information about medi-
cal ethics and basic information about palliative care which they
need to treat anyone.
The Chairman. Could I ask that Dr. Konner be allowed to get
a word in here?
Dr. Konner. Thank you very much. I have written a book on
medical education that has been widely read and praised, to some
extent, by leaders of medical education. I take a dim view of the
term process of medical education and training. I think that the
problems are far more pervasive and serious and can be addressed
by more courses in medical ethics or a course in palliative care.
I have been teaching pre-medical students and to some extent
medical students for many years. I think that many of the wrong
people are being brought into medicine and they are then being
trained in very counterproductive ways.
I think the distinction between medicine and doctoring is a valu-
able one and that the concept of doctoring covers many virtues, in-
cluding doctor/patient communication, including the concept of car-
ing, the concept of palliative care and nursing and the process of
ethical judgments, which really boils down to a kind of sensitivity
that modern physicians have lost.
I think that the Federal involvement in funding of medical edu-
cation is certainly a powerful instrument for changing the way
these things are done. But I would focus on two things.
35
First of all, the extreme emphasis on science as the basis for
medicine, which has I think done great things for us, but which is
not all there is to medicine. And second, I think the process of resi-
dency training is so brutal that people cannot come out of it with-
out resentments, angers and insensitivities that have been in-
grained in them.
And adding courses to medical schools simply will not do the
trick, because medical students know very, very, very well that
they are not being taught in medical school to become doctors.
They are taught to become house officers — interns and residents,
that is what they are being trained up for. They are scared and
well they should be because their survival depends on their adopt-
ing the skills that are being modeled for them by these young peo-
ple who are being brutalized and who are in the most stressful
phase of their professional careers.
They are the models for medical students, not doctors who are
fully trained and practicing in a more humane way.
Senator Rockefeller. I have taken too much time, Mr. Chair-
man.
The Chairman. Thank you, Senator Rockefeller. We want to get
to Senator Chafee.
Could I make just one point before we go by though? When we
speak of medical ethics, let us not raise the subject, but let us cer-
tainly acknowledge it. The profound, perhaps the most profound,
vision in American life today is the division over the issue of abor-
tion, the issue of medical ethics, and it is not resolved. Medical eth-
ics is not molecular biology in which you can take down the book
and say, here it is now, learn it. There are choices that are an-
guished and unresolved and probably unresolvable.
Senator Chafee?
Senator Chafee. Thank you, Mr. Chairman. I think this is a fine
panel. I must say this group represents the University of Chicago,
Cornell University, Harvard Medical School, Emory University,
and Dartmouth Medical School and if they cannot do something
about medical education, I do not know who can.
The Chairman. I think they have been teaching us a lot.
Senator Chafee. Well, that is quite a cross section.
Now, what I would like to do, gentlemen and ladies, is to take
the recommendations of Dr. Lynn and if you could just say yes or
no; do you agree or not agree with Dr. Lynn's recommendations.
What I am seeking here is some guidance of what we ought to do.
I will start on page 11-C of Dr. Lynn's testimony. It is a yes or
no, no maybes, if you would, please.
Change Medicare reimbursement to require advanced care plan-
ning in the managed care package and to allow it to be billed in
fee-for-service Medicare.
The Chairman. I think we are going to have to be systematic
about this. Dr. Cassel?
Senator Chafee. Did everybody get the question? I want to make
sure we all understand the question. Change Medicare reimburse-
ment — and, Dr. Lynn, you may have to help me — to require ad-
vanced care planning — this is what we have been talking about
today — in the managed care package and to allow it to be billed in
fee-for — service Medicare. That last part I am not sure.
36
Dr. Lynn. Well, it is either fee-for-service or managed care.
Senator Chafee. In other words, it is adding a fee-for-service
part to managed care to cover this particular item?
Dr. Lynn. If you have a managed care system you have to in-
clude it; and if you have a fee-for-service system it has to be
billable.
Senator Chafee. OK.
Dr. Lynn. It gets it either way.
Senator Chafee. Either way. All right. Start.
Dr. Cassel. Yes.
Dr. Cassell. Yes.
Dr. Emanuel. Yes.
Dr. Konner. Yes.
Dr. Lynn. Sure.
Senator Chafee. You wrote it. I would be surprised if you dis-
agreed with it. [Laughter.]
Senator Chafee. Now, next, change physician experience toward
long-term care of seriously ill patients by paying more for persist-
ent care by the same practitioner than for acute care by a shifting
cast and by mandating training of generalists through regulating
graduate medical education payments under Medicare. I think that
should be divided in two.
First, change physician experience toward long-term care of seri-
ously ill patients by paying more for persistent care by the same
practitioner. That is the point, I guess — who was making?
The Chairman. I think Dr. Emanuel was making.
Senator Chafee. — Dr. Emanuel was making. Does everybody
agree?
The Chairman. Let us go in sequence.
Dr. Cassel. Yes, very important.
Senator Chafee. Dr. Cassell?
Dr. Cassell. Yes.
Dr. Emanuel. Yes.
Dr. Konner. Excellent idea.
Senator Chafee. Excellent. And Dr. Lynn is finding all this very
agreeable.
Now the next part of that. Mandating training of generalists
through regulating medical education payments under Medicare.
What exactly does that mean?
Dr. Lynn. Medicare pays a huge proportion of graduate medical
education costs through essentially a capitation, GME payments.
Senator Chafee. So you would mandate the training of general-
ists?
Dr. Lynn. Something like the American College of Physicians'
recommendation of at least 50 percent of all slots being aimed to-
ward primary care. Some such real goal.
Senator Chafee. So you would mandate — I am not sure I vote
yes on that part. [Laughter.]
Dr. Lynn. You would not have to go with that particular scheme.
But somehow to use the leverage of the payment scheme for house
staff to see that you get the doctors who can provide this service
rather than to see that you get whatever it is that people choose
to train themselves into, which is what you get now.
37
Dr. KONNER. Could I point out that for 25 years leaders of Amer-
ican medical education have decried the crisis in primary care in
the United States and have mounted programs to increase the
number of medical school graduates who go into primary care. And
during all those 25 years the percentage of medical students who
elect primary care has gone down and down and down. The oppo-
site of what they were trying to accomplish in their stated purpose
and their programs.
Senator Chafee. All right, next. Encourage innovations to de-
velop Medicare benefits which would provide managed care of the
broader scope, but limited to hospital and emergency services.
Encourage innovations to develop Medicare benefits which would
provide managed care of the broader scope.
Dr. Lynn. This is a reflection of something we are spearheading
at Dartmouth with funding from Robert Wood Johnson, trying to
sort out what it is that the benefit would look like if very seriously
disabled, very elderly persons were to write it.
What we are finding in focus groups around the country, people
from all kinds of socio-economic backgrounds, is that by the time
you reach 85 most people are scared that they have food, that they
have shelter, that they have comfort, that they have somebody who
will respond in the case of an emergency. They want protected
against most surgeries unless it is going to relieve them of pain.
They want to stay out of hospitals if at all possible.
These people need something like a hospice benefit. But unlike
hospice, they cannot promise to die soon. So they need a hospice
benefit that is tailored to the possibility that they may live six or
eight or 10 years. What we are looking for then is to work on the
innovations that would allow a flexible benefit that would not make
resuscitation and surgery a high priority, but would instead make
supportive services and enabling services a high priority.
I do not know how they will end up costing out or who will end
up wanting them.
Senator Chafee. The second part of that, but limited hospital
and emergency services. How could you limit those?
Dr. Lynn. In our hospice work here in Washington, we almost
cut out all use of emergency services just by having very good
nurses available 24 hours a day. People do not want to have to call
9-1-1. They call 9-1-1 because that is the only thing they have. So
if you provide excellent backup services for things that scare you,
then you can stay out of the emergency medical system largely.
If you have a way of getting good nursing aides into the home
quickly, you can keep people from coming into the hospitals. Two
years ago when I left here, I would not hospitalize very elderly dis-
abled persons with heart attacks. I would be able to mobilize
enough services to take care of them in their homes.
That is the kind of innovation that I am looking for — the possibil-
ity of providing some alternatives other than the routine use of a
hospital just because it is there.
Senator Chafee. Now, would they call, for instance if this was
provided through an HMO, would they call an HMO, they would
have a relationship, and then a nurse would come out?
Dr. Lynn. Yes, or would at least decide who needs to come out.
Senator Chafee. Yes.
38
Dr. Lynn. Very often I would be there. The doctor has to be will-
ing to go to the home to make this work.
Senator Chafee. Let us go to the next one. As I understood in
your testimony, Dr. Lynn, you said the last decent work on prepar-
ing for death and what diseases would have you die was by Sir
William Osier at the turn of the century.
Dr. Lynn. The last sequential study of hospital deaths. It is a lit-
tle more narrow than you said. But, yes. Basically we have ignored
the field.
Senator Chafee. Now what you have suggested here in your
next recommendation is to mandate each Institute in the NIH
which has as its purview one or more substantial causes of death,
to report about the costs of death for each major disease and what
can be done. This is your medical training. Again, reflecting back
to what was previously said, I guess by Dr. Emanuel, when he
went through Harvard Medical School he had no courses in this.
You would have this compiled so that a doctor would have the
information available?
Dr. Lynn. Right. At the present time you cannot say what the
usual course to death is for congestive heart failure and a third of
us will die of it. You cannot say what the usual course to death is
of Alzheimers Disease and yet about 50 percent of people who
make it to 80 years old are going to have some kind of dementing
illness.
That kind of basic descriptive work has been ignored by our Na-
tional Institutes funding research. It is not terribly expensive.
Dr. Konner. Natural history.
Dr. Lynn. The unnatural history. The history
Dr. Konner. Current unnatural history.
Dr. Lynn. As currently shaped by our care system.
Senator Chafee. Does everybody agree with that last one? Yes
or no.
Dr. Cassel. I would add also the treatment of those illnesses at
the end of life, symptomatic treatment, not just describing the nat-
ural course, but looking at places where it makes sense to make
the patient more comfortable.
See, there is an anti-science bent off into how people think about
this end of life care issue which I think is wrong. In fact, there is
a great deal that modern science can do to make people comfortable
and not unnecessarily prolong life.
We ought to charge the National Institutes of Health to do more
work in that as well.
Senator Chafee. All right. Doctor? Yes or no?
Dr. Cassell. No, as stated. I mean, the problem is not simply
knowing the natural history.
Senator Chafee. All right.
Dr. Cassell. Or separating off end of life issues from other care
issues. It is being concerned with the care of a patient from the be-
ginning of an illness to the end of the illness and the changes in
treatment that are required during that period of time. So we are
not merely talking about the biology of the disease but the care of
the disease.
Senator Chafee. Dr. Emanuel?
39
Dr. Emanuel. I think the point that has been made, the natural
history description is simply insufficient is correct. So as stated I
could not possibly endorse that.
Senator Chafee. But you would agree with Dr. Cassel?
Dr. Emanuel. Right. I think we need a broader view of what we
are going to describe, which includes the care that should be pro-
vided.
Senator Chafee. All right.
Dr. KONNER. I disagree with it as stated. I think that separating
this out into all the different Institutes because you die this way
of emphysema and that way of breast cancer, that is not the point.
I think maybe we should have a National Institute of Pain and Suf-
fering. Maybe we should have a National Institute of End of Life
Care.
The Chairman. Dr. Lynn, you have won 80 percent of your
points.
Senator Chafee. I was going to say. Dr. Lynn is batting about
750 here, doing pretty well. If you want a couple minutes to re-
spond. Make it a minute.
Dr. Lynn. Only that I think everyone is agreeing that we need
more information. Exactly how to craft the Federal level response
which could generate that information might take some further
work. I think all of us would agree, we need to know how the dis-
ease evolves and what we can do that actually makes people's lives
better, reasonably efficiently, and that can be delivered within a
system of care.
Exactly how to do that, whether it would be in a separate insti-
tute or this institute, I do not care, I just want it to be there.
Senator Chafee. Thank you very much.
Thank you, Mr. Chairman.
The Chairman. Thank you. Senator Chafee.
Senator Danforth, you had some questions.
Senator Danforth. Yes, thank you, Mr. Chairman.
First, Senator Hatch had an opening statement which he would
like entered into the record.
The Chairman. We will place it in the record.
[The prepared statement of Senator Hatch appears in the appen-
dix.]
Senator Danforth. I just have two questions. First, Dr. Lynn,
you said that only a third of the advance directives find their way
into the patients' charts. Then you said further that they do not ap-
pear to have much of an affect on how the patient is treated. That
is an amazing statement.
Dr. Cassell said that he thought that one of the things we might
be thinking about is how to make sure that there is something in
the charts, one way or the other.
Is this in your opinion an area that we should be dealing with?
Dr. Lynn. Well, my history in this regard is quite troubled, since
I was the principal author of the President's Commission Report
that advocated formal advance directives and that really gave this
field a start. I use them a lot in my practice, not necessarily writ-
ten or formal, but an agreement between me and the patient in re-
gard to what kind of care should be done.
40
I believe in advance care planning. I think that, in an era of
chronic disease, people should have the authority to shape how
their care will unfold. On the other hand, the raw evidence is that
we do not do very well at it and that the kinds of things that are
in the advance directives at this point are often terribly frail. They
do not really direct care.
A standard form living will really says that, like almost everyone
else in the country, there is some point where I want you to draw
the line. But it does not really give very specific advice about what
that is.
What we should do in regard to that is somehow to find the ways
and the leverage points that yield effective communication. I am
not sure how much more can be done with the generation of docu-
mentation. But the effect of communication is striking. Perhaps we
can really encourage longitudinal care. Maybe one of the answers
to Senator Rockefeller would be to mandate through GME that
physicians in training have to follow people through to death, be-
cause we do that very little in our care schemes.
Maybe there are some other ways of leverage.
Senator Danforth. The least we could do is to make sure that
there is something one way or the other in the patients' charts.
Otherwise people have filled out a document and they may as well
not have done it, even if it is an adequate document.
Dr. Lynn. A standard form living will is almost never adequate,
unless it is not used as a springboard for communication, which I
think is its major use. Other than that use, I think standard living
wills are almost irrelevant to care because the directive does not
determine any real decision.
Senator Danforth. Let me just say this. Before we get to the
quality of the living will, and I understand that point, but your first
statement was that even if it was the highest quality or the most
precise living will you could have, two-thirds of them are just gone
somewhere. They are in the file drawers or some place. They are
lost.
Dr. Lynn. We do not actually know how that works after the
PSDA. In our study we have 800 actual recent documents now to
study. Of those, I think about 40 or 50 have specific instruction
that would shape a specific decision. We have not looked at wheth-
er that subset is better known in the medical record.
Senator Danforth. May I interrupt you? It seems to me you are
making two points. One is that they are insufficiently precise to
shape decisions. I understand that point. I would like to take that
point for a minute and put it to the side.
I would like to get to the first question. Even if you had the ideal
living will, where is it? I think you said that only a third of them
are even on a patient's charts.
Dr. Lynn. What I was trying to say, I think, is that if we had
ideal living wills they could only have resulted from effective com-
munication because it is the only way you could get there. You
must have talked about what it is that you as a patient really face
and come to some accord on what makes sense to do.
That process is terribly important. And if we then documented
it in a living will, my guess is that those living wills would be
much more effectively used. I do not know that yet.
41
Senator Danforth. I think Dr. Cassell has said that the chart
at least should have something on it.
Dr. Cassell. Right.
Senator Danforth. I mean, that would be a forcing mechanism,
just as the admissions process now is designed to be a forcing
mechanism to have the patient focus on something. You could have
the chart being a focus mechanism.
I am only talking about something mechanical for the time being,
not the quality of the living will. But it seems to me that if the me-
chanics were that the chart had to have on it something that would
tend to open up the communications that led to the something that
was to be in the chart.
Dr. Lynn. Maybe there are two points of leverage to achieve
what you are trying to get. One is that in a hospital people care
terribly about the resuscitation decision. Now we specifically exlude
some people from resuscitation.
We could instead require an affirmative decision about resuscita-
tion. The doctor would have to state definitely whether the person
will be or will not have an effort at resuscitation. That would be
a very useful leverage point.
The second point of leverage would be to require advance plan-
ning to be entered on the chart, whether that will make sense, we
have now under study. I will not know for a couple of months
whether we made a difference by doing that. My sense is that, if
you have somebody who is mandated to make sure that plans are
made and known, you do get an effect, but I do not know that for
sure yet.
Success would require not only that plans get on the chart, but
that somebody have to have made acknowledgement of it beyond
a clerk. There has to be a doctor or a nurse. Exactly how to do that
is not entirely clear.
Senator Danforth. I think Memorial Hospital does that.
Dr. Lynn. I think we do it very well at the hospital I am now
working in. But still on the whole, I cannot show that it is being
done well.
Dr. Emanuel. Senator Danforth, I would just suggest that we
not over focus on just the piece of paper in the chart. Almost all
of us who work in this area believe that this piece of paper is effec-
tive only as a vehicle to communication.
One of the problems is not to have the communication. To keep
emphasizing the chart though keeps putting it back on the inpa-
tient at the hospital standpoint of entry into the medical system.
I think that is probably not the best time to begin the discussion
or the communication about end of life care. The best time is prob-
ably in the physician's office.
That way you have a very good lever. Right? The lever is, make
it a reimbursable issue. Make the physician want to have that dis-
cussion, want to bring it up. I do not think you have to mandate
that something be done in the chart where the discussion will not
happen.
I mean, there is much evidence that if it is brought up in the
hospital patients do not remember. Even being introduced to the
Patient Self-Determination Act because they come in, they are con-
cerned about other things, as Dr. Cassell mentioned. That even if
42
they go home and have remembered they actually do not complete
these documents.
I think the better time is to take them when there is no crisis.
That way the patient's mind is clear. That is the office setting. And
we do have a mechanism — a Medicare easy mandate.
Dr. Cassell. But it is not either or. Obviously, the document on
the chart is more easily handled if there has already been a discus-
sion in the office. Further, the discussion in the office will not have
an impact on the in-hospital care unless there is something on that
chart that indicates what that discussion was.
And in the best of all possible worlds — we will have the best of
all possible worlds, but we do not — so we will do the best to push
people into a discussion which they are presently not having and
documents tend to do that, just as reimbursement incentives will
help us get that to happen in the office.
Senator Danforth. I like they are two good complimentary
ideas.
I have one other question, Mr. Chairman.
The Chairman. You may surely do.
Senator Danforth. On the issue of medical malpractice
The Chairman. That is what I was going to ask.
Senator Danforth. All right.
The Chairman. No, I think that is what we want. We do not
want to let that go by.
Senator Danforth. Well, the question is, is this an important
issue to deal with in connection with the subject we have been talk-
ing about today.
Dr. Cassel. Let me start addressing that. I think it important
not because there is a huge risk to physicians in this area but be-
cause physicians feel like there is. All the evidence is that very few
physicians are charged either with malpractice or what we are
being feared more extensively, which is homicide charges, for ex-
ample.
The Chairman. That fellow with the beads of sweat.
Dr. Cassel. The fellow with the beds of sweat on his forehead.
The Chairman. He knew that so much more pain is okay.
Dr. Cassel. Exactly. If I give this patient too much morphine I
am going to be accused of killing her. While the recent trial of Dr.
Kevorkian tells us that most juries in this country would never
convict a doctor in a situation where they felt like this might be
something that they would want, the fact of the matter is that
those laws are still there and those malpractice threats are still
there; and physicians are made very anxious by this.
You see it constantly in discussions about decision making that
people will not aggressively treat pain and symptoms because they
are fearful of crossing over that line.
So I think that doing something about relieving that fear, what-
ever mechanism that takes, is going to be very important to freeing
the physician up to take a more active role here.
Dr. Emanuel. And in part many of those laws vary State by
State. And ironically New York actually has some of the most con-
fusing and restrictive laws on the end of life care issues, which is
why I was not surprised that that happened in New York.
43
Senator Danforth. Are we talking about the general malpractice
issue or is this a subcategory? In other words, the trial lawyers, it
is tough to have any kind of tort reform because of general opposi-
tion.
Dr. Emanuel. I do not think this is general.
Senator Danforth. But is this like a subgroup which could be
dealt with in a discreet manner?
Dr. Lynn. Actually, a parallel issue of criminal law.
Dr. Cassell. Well, the problem often is that physicians hide be-
hind their fear of malpractice any time an uncomfortable cir-
cumstance comes up. Doctors all make very bad lawyers, but that
does not stop us from talking about it all the time. So doctors are
always saying, I do not want to be sued, and beads of sweat are
quite common.
But they will be glad to point out to you, if you think the con-
versation makes beads of sweat, an indictment makes even more
sweat. So if they are relieved of fear in a particular area, even if,
in fact, malpractice is not a big problem as Chris has pointed out,
they are relieved of fear, then they are obligated really to deal with
the problem rather than to hide behind that fear.
Dr. Lynn. I should tell you that when I first spoke publicly about
vdthdrawing feeding tubes, an issue that you in Missouri have had
a lot of familiarity with, prosecuting attorneys in various regions
offered their view to such esteemed publications as USA Today,
that such actions in their jurisdiction would lead to criminal indict-
ment, that they would have to test whether withdravdng a feeding
tube from a dying patient counted as homicide.
I think we are at the same boundary now with very vigorous
treatment of severe dyspnea, where I have said publicly that I
treat severe dyspnea with sedation so people do not suffocate to
death.
But there are certainly prosecutors who think that the care
might well be contrary to the criminal law. I do not think that the
Federal level can solve that problem directly but could sponsor the
appropriate consensus and guidelines endeavors that would provide
the kind of backup that Chris and Eric have given voice to.
If the lOM or AHCPR or some other, you know, esteemed body
came out with sa5dng, well, cases like this really should not raise
these concerns, there are an awful lot of front-line doctors and
nurses who would behave much better.
Dr. Konner. I think that there has been the clear evidence in
court decisions recently that prosecutors' attitudes are out of line
with what the average American thinks about this subject.
The Chairman. It is surely a small consolation to doctors to
know the jury will let him go.
Dr. Konner. Well, what I was about to say was that I think you
gentlemen have perhaps a role to play in making the prosecutors
a little bit less zealous.
The Chairman. Well, how do you feel about that? You were one
of those, your grace. [Laughter.]
Senator Danforth. I think it is easier for us in Congress to deal
with the tort question than the criminal law question because the
criminal law question is simply a State matter.
44
I guess we could maybe, you know, I mean use our handle on
Medicaid or something to get them to do something. But I just real-
ly have not thought it out.
Dr. Lynn. Just providing funding for the State Justice Institute
to run an RFA on establishing guidelines for prosecutions of medi-
cal practice.
Senator Danforth. But it is the State Legislature that is going
to determine it.
Dr. Lynn. It is not the legislation; it is an interpretation that we
need. The legislation can stay exactly as it is.
Senator Danforth. I know. But I mean it is the State Legislator,
plus the prosecutor. I do not think they are going to pay much at-
tention to anything we do. I just have not thought it out.
Dr. Lynn. Tort reform would help, too.
Senator DANFORTH. Sorry?
Dr. Lynn. Tort reform would help, too. Because part of this is —
particularly with the family, the complex family situation where
there is always son or daughter in Colorado who comes in at the
last minute and has a different opinion about things and leads to
less security of doing what you think is the right thing and what
you worked out with the patient is the right thing.
So I think there is always going to be that dimension to it, which
especially in this issue that I raised at the end about managed care
and the different environment of that I think some effort towards
tort reform would go a long way towards freeing physicians to do
what they need to do.
Dr. KONNER. We have not said much about the durable Power of
Attorney for health care and I think it is important to stress that
as a different instrument, which many of the concern for dying or-
ganizations feel is more useful and binding than the living wall,
that is to designate officially someone who will have the decision
making power in the even that you lose it. Then you obviate some
of these conflicts among family members and so on.
The Chairman. I would like to say because our caucus is to begin
very shortly now, Senator Danforth, I thought we were pretty well
agreed we were going to try to do something in tort reform.
Senator Danforth. Right.
The Chairman. Is there a model statute equivalent? I mean, has
anyone tried to tell us what we should do? I do not think so.
Senator Danforth. One thing that was just suggested to me was
the possibility that practice guidelines could be used as presump-
tive defenses.
Dr. Konner. If we got serious about practice guidelines they
could then be used in that way. But we have not gotten serious
about it yet.
Dr. Emanuel. Every major medical organization in this area
does have agreement on what the appropriate practice is and that
increasing morphine, for example, is completely acceptable. So I do
not think in terms of strict practice guidelines that is the problem.
Senator Danforth. I mean, if we created as a matter of law
there was a defense
Dr. Emanuel. Oh, yes.
Senator DANFORTH. — that if you followed the practice guide-
lines
45
Dr. Emanuel. On palliative care, right.
Senator Danforth. Right.
Dr. Emanuel. That would help a lot.
Dr. KONNER. You know, a sitting Surgeon General, Dr. Sullivan,
a few years ago issued a report saying that American doctors are
inept in their handling of pain and urged improvements in training
and practice. As far as I know there were not very many con-
sequences of that reported.
Dr. Cassell. There is a practice guideline on the treatment of
acute and chronic pain now.
Dr. Emanuel. Just issued by the AHCPR.
Senator Danforth. So if you said well if you follow that guide-
line that is the defense.
Dr. Cassel. Well, you need to do more about the end of life con-
text because that guideline does not specifically address that issue.
And it is not just pain, that we are dealing with other symptoms,
too.
Dr. KONNER. And the defense does not protect you fi-om the in-
dictment.
Senator Danforth. No, this is just simple liability. I do not know
how to do the criminal. I mean, we can think about it but it just
does not occur to me right now.
Dr. Konner. Well, the defense does not protect you from the suit
either. I mean, it protects you fi-om the losses, but you have al-
ready been put through the probably experience
Senator Danforth. I think you could have it on summary judg-
ment. I mean, you could get it pretty quickly decided if you had a
ready defense.
Dr. Lynn. Remember, you are tackling chimera, that in regard
to the care of the dying there are no cases. I really mean that there
are, effectively, no cases. The last time I checked there were none
against hospice practice. Malpractice cases are almost impossible
on end of life care, unless you reach the level of punitive damages,
because conventional damages are so small.
The tort system does not serve very sick people well because they
do not have productivity and other serious financial damages. What
you are tackling is the doctor's perception that there is a real risk.
You just have to make the doctor comfortable that liability would
be limited if it ever arose. Interesting psychology.
The Chairman. Doctors have a right to be comforted. [Laughter.]
Dr. Lynn. Palliative care for doctors.
The Chairman. We are going to have to close now after an ab-
sorbing 2V2 hours.
Senator Danforth, you know, we are going to look to you on this
matter. I think we should legislate, do you not?
Senator Danforth. Yes, I do. I think we did a lot in 1990 and
that it was a big step forward and there is more to do.
The Chairman. We have the possibility, which certainly we
would desire, of legislation which basically looks to the profession
to set the details. If there is a standard practice promulgated by
the associations we would like to point to that, because that can
change a lot faster and be a lot more informed than our art.
As Senator Chafee says it, the horror we are involved in with
Medicaid. Medicare has 300,000 pages of rules. What was it John
46
Chafee was saying yesterday, at 4:00 in the morning some years
back he and Pete Stark were in a corner of the room on the House
side of the Capitol deciding how much someone should be paid for
reading an EKG. We want less of that and more of the kind of con-
cerns you have raised.
We want to thank you very much. You have come great distances
with wonderful testimony. We are much in your debt, as are, we
hope, the people who will live with the legislation we are trying to
produce. With that, we are thanking our reporter and thanking
your grace.
[Whereupon, at 12:28 p.m., the hearing was adjourned.]
APPENDIX
Additional Material Submitted
Prepared Statement of Christine K. Cassel, M.D.
Senator Moynihan and members of the Committee and members of the Staff. My
name is Dr. Christine Cassel. I am an internist with special training in Geriatric
Medicine and Medical Ethics. I am Chief of the Section of General Internal Medicine
and Director of the Center on Health Policy Research at The University of Chicago
where I am also Professor of Medicine and Public Policy. I am Chairman of the
Health and Public Policy Committee of the American College of Physicians and a
member of the Board of Directors of the American Board of Internal Medicine. I am
pleased to be able to testify this morning on the important topic of end of life care
in the context of health care reform.
Care at the end of life is a neglected issue which has finally come to the attention
of many people in the field of medicine and health care. I believe that this attention
is long overdue and much needed. Just within the past year the American Board
of Internal Medicine has constituted a committee to define the areas of clinical com-
petence in the care of dying patients that should be required of internal medicine
trainees. The Institute of Medicine of the National Academy of Sciences has com-
pleted a feasibility study recommending that The Institute of Medicine launch a
major research program about the quality of care and process of decision making
around the end of life. I was asked last week to chair a project on the policy dimen-
sions of improving the care of terminally ill patients to be launched by the Milbank
Fund in New York. These are indications that major groups concerned with health
care in The United States are turning their attention to this important issue.
The entire nation learned an important lesson from former President Richard
Nixon. As his last days were reported by the press, President Nixon had made it
known to his physicians that he did not want to be kept alive by heroic measures
that would not be likely to return him to meaningful life. Therefore after suffering
a major stroke drugs were given to reduce the swelling of his brain, but he was
never placed on a ventilator and when his heart did stop beating, no attempt at re-
suscitation was made. These events were reported by the news media and an exam-
ple was given to the American people of how a dignified death can be conducted
even within the context of modern medical technology. Contrast this with a case
that became widely known several years ago of Helga Wanglie, an 85 year old
woman in Minnesota who had total loss of conscious brain function and was kept
alive in an intensive care unit on a ventilator for almost a year before her death
because her husband was hoping for a miracle. The difference between these two
cases reflects the totally divergent personal views of the patient and demonstrates
the ability of the current health care system to respect those personal views. Unfor-
tunately, there are still many and increasing numbers of people who would prefer
to exit the world more like President Nixon; but events and "the system" prevent
this from happening. As we move into an era of health care reform we have an op-
portunity to improve the care of patients at the end of life. To make these improve-
ments requires changes in medical practice, medical training and health care financ-
ing-
It is commonly thought that a great deal of money is spent on patients in the last
days and weeks of life that could easily be saved if we simply encourage patients
to execute advance directives and stopped the use of futile interventions. A number
of experts question this view. I believe that it is still controversial exactly how much
potential savings in the health care system there might be if extraordinary efforts
at prolonging life were able to be discontinued earlier or not started. But regardless
of the answer to that question, there is a more important issue here, which is the
(47)
48
quality of care of dying patients and the culture of care for the dying within Amer-
ican medicine.
Dr. Lewis Thomas, an eminent New York physician also died this year. He was
President of The Memorial Sloan Kettering Cancer Research Center and a noted au-
thor on medicine and society. He along with many others — pointed out that the
progress of medical technology and medical science has led to a culture where the
death of a patient is too often viewed as a failure. Attempts are made to prolong
life in the face of common sense evidence that such attempts are futile. Patients and
families are not brought into the honest discussion of the relative burdens and bene-
fits of potential life sustaining treatment. Public awareness of advance directives
has grown and the 1990 Patient Self Determination Act has contributed to that
growing awareness. But it has not changed the culture of dying in many of our hos-
pitals.
I have a close friend whose mother died in a cardiac care unit three weeks ago.
Her suffering was mercifully short, but my friend said afterwards that her main im-
pression from that experience was that the physicians were completely unwilling to
sit down and talk with her about the fact that her mother was dying. That word
was never used. Instead, euphemisms and evasions surrounded the decisions that
were presented to her. The Patient Self Determination Act has not solved this prob-
lem.
The health care environment is the result of social forces as well as medical atti-
tudes. The cultural context supports the denial of our mortality, and thus, we have
created a system in which patients all too often feel that the only option other than
intensive care is abandonment. Instead we need to offer aggressive comfort are
throughout the health care system code, that says to the patients and family that
we will not abandon you, you will not sufter, and you can exit this world on your
own terms with personal dignity and meaning. The Hospice movement has allowed
this to occur for a minority of patients who have access to Hospice, but the main-
stream of medicine still does not allow this approach. It is still the case that a ma-
jority of people die in hospitals and nursing homes where it is rare under current
circumstances that a hospice approach can be applied.
Requirements for optimal end of life care Include the following:
1. Medical professionals need to understand the limits of medicine and to
view death, when appropriate, as an inevitable and personally meaningful chap-
ter in the life of their patients. They should not consider the death of a patient
a personal failure.
2. knowledge of the principles and scientific basis of palliative medicine
among physicians and nurses should be widespread. Palliative medicine is a
specialty focused on comfort care and relief of suffering rather than prolonga-
tion of life.
3. Hospitals (including emergency rooms) and nursing homes should be struc-
tured to make optimal palliative care available to a patient wherever he or she
may be. It should not be necessary to "transfer" to hospice in order to get this
kind of care.
4. Reimbursement for services should not be dependent on acute curative care
being attempted.
5. Home hospice care should be widely available with seamless continuity be-
tween hospitals and nursing homes, in the case that home care becomes more
difficult than the family can manage
6. A culture of medicine and society that allows, even enhances, open discus-
sions between patients, families and providers about the risks facing patients
with serious disease and the options of comfort care.
7. Enhanced avenues of communication for patients to make known their val-
ues and preferences in end of life care, and for physicians to honor those wishes.
Building on the PSDA, it is necessary for primary care physicians who have
long term relationship with patients to remain involved with their care to the
end.
What are the barriers to better care of dying patients that health care reform
might address?
1. Payment for health care services needs to be flexible enough to allow pal-
liative care to occur wherever the patient is being cared for. Currently many
insurance companies. Medicare included, will not allow pajnuent for patient
care in the hospital if "only comfort" is provided. Many patients do not have the
support at home necessary for hospice care as it is defined under current Medi-
care rules and many people in the United States cannot deal with the care of
a dying patient in their homes. We should allow patients to be able to die with
comfort care in hospitals or nursing homes or where ever they may be.
49
2. We need a better understanding of the best approaches to paUiative care,
within the framework of medical interventions as well as within the framework
of systems of health care. Federal initiatives framed by health care reform could
support initiatives to encourage and examine innovative approaches to the de-
livery of end of life care, to the measurement of quality of care and to the clini-
cal use of those measures.
3. We need more extensive training of all physicians, especially those in pri-
mary care, in the science and art of palliative medicine. Physicians are not gen-
erally well trained in comfort care techniques, symptom evaluation and symp-
tom control. These areas of expertise are currently the realm of only a small
number of physicians and nurses who specialize in hospice care. Many of these
providers focus entirely on patients dying of cancer. This type of care should be
available to patients dying from heart failure, lung disease or any other illness.
4. We need to encourage hospitals and physicians to talk more openly about
death and dying and approaches to setting limits on life sustaining treatment.
While important research is being done that will give us more information
about the likelihood of success with many of these life sustaining treatments,
it is unlikely in most cases that we will ever have the full knowledge necessary
to define futility in most cases. Thus, we will always be dealing with uncer-
tainty. But if our patients understand that our concern is for their comfort and
dignity at the end of life, then it is much less likely that they or their families
will demand unreasonable interventions.
5. The physician needs to feel comfortable taking some of the burden of deci-
sion making on his or her own shoulders. The family should not be made to feel
that it was because of their decision that a family member died, but rather that
clear comfort was offered by a physician who was brave enough to say "medical
science cannot keep your mother alive much longer, but she will not suffer and
we will take good care of her." To allow this to happen requires that physicians
be relieved of the anxiety of the tremendously adversarial environment that our
current malpractice crisis has created. While many legal scholars will argue
that physicians who make these decisions have little risk of being sued, it is
nonetheless a terrible fear that physicians live with day in and day out. It is
around these most sensitive and challenging situations that that fear is most
harmful to the optimal care of patients and the comfort of their families. Thus
significant tort reform would go a long way towards creating a better environ-
ment for physicians and patients around end of life care.
6. Finally, let me say a few words about the brave new world of managed care
which is the direction that most health reform proposals are leading, and to-
wards which the health care industry is progressing even as we speak. Prepaid
approaches to health care financing have been shown to provide more com-
prehensive benefits and more accountability for health care costs than fee for
service medicine. There are many examples of successful and high quality man-
aged care organizations. Nonetheless, most of the United States still does not
have extensive experience with this approach to health care financing and as
we move to managed care, we should be cautious and aware of the tremendous
differences in the ethical context it presents to the physician. The traditional
role of the physician is to do whatever is the right thing for the patient, regard-
less of cost. Managed care gives the physician an additional fiduciary respon-
sibility to the patient and to the group of patients who have enrolled in that
system to be prudent in the use of medical care and to reduce unnecessary
costs. If the beneficiaries are trusting the physician to do this, they must realize
that there are times when this situation will put the physician in an
irresolvable double bind, unless changes in the legal and institutional context
occur. There would be no such problems if all patients were like Richard Nixon.
But if Helga Wanglie's family belonged to an HMO and demanded that she be
kept alive on a ventilator as long as possible and that attempts be made to re-
start her heart when it stopped, even though her brain had totally ceased func-
tioning, the other beneficiaries would have to pay for this care. If a physician
or the system took the stance that this was not fair allocation of resources, the
legal system would not back them up. Thus, the physician would still be vulner-
able to malpractice claims if he decided to discontinue life sustaining treatment
in this case and if he did not, he would be vulnerable to being fired by the in-
surance company or the HMO because he was using too many resources unnec-
essarily. This is an untenable situation for physicians. It is not insoluble but
it requires that we explicitly define new roles that we are asking physicians to
take, and then support them in those roles with clear ethical standards and re-
lief from trivial or unnecessary threats of malpractice.
50
CONCLUSION
The end of life is something all of us will face. What we may not know is the dis-
ease or event which will cause our death, or where it might happen. We stand a
better than 50/50 chance that our deaths will occur in a health care institution, and
a far greater likelihood that the world of medicine and health care will somehow
define our last days or weeks. Interest in improving the quality of this care is thus
not the province of any particular interest group, medical specialty or disease advo-
cates. Every aspect of our health care system — including medical education and
training, structures of systems of care, approaches to financing and reimbursement
and the agendas of our research institutions ought to be included in this vitally im-
portant effort.
Prepared Statement of Eric J. Cassell, MD
The right to refuse treatment is a principle that is firmly established in American
medicine. While it has been part of the law for almost a century, it has been an
everyday reality for only the last few decades. The increasing strength of the con-
cept can be attributed to the rising legal and social status of patients, who, with
other groups such as persons with disabilities have finally achieved full personhood.
The idea that patients should play a major part in decisions about their treatment
has been a focus of the bioethics movement since its inception twenty-five years ago.
The Patient Self-Determination Act of 1990 has been an important force in ensuring
that patients have an opportunity to both make their wishes known and to provide
for someone who can speak for them should they lose the capacity to decide for
themselves.
It remains true, however, that many Americans die in a manner that almost none
of them would have chosen while they were well. Three kinds of death are both com-
mon and particularly unfortunate. The first group is made up of patients who are
resuscitated after cardiopulmonary arrest and do not live to get off the respirator
or other support technology. The second group who endure a bad death is made up
of failed old people whose dementia has run its inevitable course into profound phys-
ical decline, and who are treated successfully for one complication after another long
after they have lost the capacity to speak or represent themselves, to interact with
persons around them, or to be themselves in any manner that their families or
friends want to remember. Patients who die with their pain inadequately treated,
whose other physical symptoms and disabilities are not properly addressed, and
whose suffering from any source is not the active and unremitting focus of their
physicians' and other caregivers' attention make up the last group whose members
also die a death for which the word bad does not seem large enough.
In neither of the first two groups does a bad death come about because of bad
behavior on the part of caregivers. In the past patients with disease states like
heart attacks, clots in the lung, profound infections, extensive pneumonias, or cer-
tain kinds of trauma commonly died from failure of their hearts, or lungs but are
now saved by resuscitation and cardiopulmonary support that sustains them until
they recover from their underlying disease and return to their former life. Of course,
not all of them recover. In which case they remain on life support technologies until
they die — which can be a long time — or until someone finally discontinues the res-
pirator. Another group of patients are also too often resuscitated. They are persons
with diseases which would not have improved even if they had not had a
cardiopulmonary arrest — for example, patients with advanced cancers, profound
strokes, or end-stage pulmonary disease. These people, as well, often die an unpleas-
ant death. They are resuscitated not because it is believed that they will return to
health and independent living, but because resuscitation has become something that
is considered necessary for any patient who will otherwise die, unless the patient
refuses, has left an advance directive so stating, or has a designated surrogate who
refuses permission for resuscitation.
The unfortunate deaths in the second group come about because of a quandary.
The increasing number of old and very old persons in the United States that has
changed our demographic pattern is attributable, in part, to the successful treat-
ment of numbers of diseases — including respiratory and cardiac diseases — that were
common causes of death among older persons in times past. The aged not only sur-
vive their heart attacks and pneumonias, but lead active lives based on high func-
tional capacity that was not common among the aged in previous eras. It is the
treatment of these same diseases and the support of temporarily inadequate cardiac,
renal or respiratory functions in the totally failed elderly — unless contravened by
51
advance directives or surrogates — that produces wards full of old people neither
dead nor alive, who will never be better and who finally die, usually within months.
It has been interesting for me to see the changing attitudes of medical students
about these cases where resuscitation or continued treatment seems futile — particu-
larly in advanced dementia. A few years back most students were vehement in their
belief that doctors must treat every infection, use feeding tubes, and deploy almost
every available therapy. Now they are doubtful. Some still want to treat aggres-
sively, others to stop treatment, but most are doubtful and cannot agree on what
criteria should guide their decisions in the absence of formal advanced directives or
a trustworthy knowledge of what the patient wants. Although they talk a great deal
about something called "quality of life," (as though everything a doctor does is not
related to the quality of patients' lives) almost none of them have been taught that
the quality of the patients death is one of the responsibilities of a physician. That
is about where the rest of the profession finds itself
The same technology and the same actions by physicians and other caregivers
that in some instances returns a wonderful gift of life, in other cases produces mis-
erable deaths, special sadness and misgivings in the survivors. Sometimes the bad
death cannot be helped, not everyone appropriately resuscitated survives. Those
who do not will die in intensive care units usually still connected to the respirator.
In many cases, however, the bad death is entirely predictable, even probable. As it
began to become clear the amount of harm that was being done by resuscitating
every dying patient, and as fear began to subside of legal action for failing to resus-
citate patients for whom it offered no advantage, physicians began looking for cri-
teria that might relieve them of the necessity for doing something they did not think
proper. Increasingly patients and families were asked for permission not to resusci-
tate. In some jurisdictions this is a relatively simple matter, in others it is more
complex. New York State has a particularly bizarre law which provides for seven
different kinds of Do Not Resuscitate (DNR) forms, depending on the cognitive state
of the patient, the presence of surrogates, and etc. While it may be important that
a dying patient not be resuscitated, that is hardly the criterion for good care at the
end of life.
With this background, the right to refuse treatment seems like a curious right.
As though there are two distinct situations, a sick person may either accept treat-
ment and receive it or refuse treatment and not receive it. As long as someone is
receiving medical care, they receive treatment. There is no such thing as no treat-
ment. Treatments are not merely technologies or drugs, virtually everything done
to or for a sick person is part of the treatment. If you think this is an exaggeration,
what would you think of your treatment if you were left to lie all night on a stretch-
er in the hallway of the hospital? If you think, further, that this is a different use
of the word treatment, what would such treatment do to your trust and acceptance
of treatment in the conventional medical sense. It is time for us to extend our un-
derstanding to the fact that patients have a right not only to refuse treatment, but
to choose treatment. To call this a right implies that someone might choose any
treatment they wanted. Clearly, that is not possible. Not everything is available, or
possible, or appropriate; there are always limits to choice. So the right must be
amended to say that they should be able to choose treatment within the constramts
of fate and the capacities of medicine. Once that is done, persons can no longer
make their choice by themselves. They require the assistance of physicians to tell
them what fate means in their instance — their diseases and prognoses — and what
medicine has to offer them. All rights have corollary obligations, but this is dif-
ferent. The information the physician provides must be tuned to this patricular pa-
tient to be of value, just general information will be inadequate. In order to do that,
the doctor must have some knowledge of the patient, and have a relationship of
trust with the patient. Without a basis in trust (trust does not mean blind trust)
the physician would not be able to find out much about the patient and the patient
would not be able to trust the information given. Finally, the physicians information
must be given in such a manner that the patient, no matter how sick, will be able
to make choices.
The right to choose treatment puts a different cast on things than the right to
refuse treatment. The biggest difference is that the idea of an independent, autono-
mous patient exercising his or her right is replaced by two people in community
with a common goal, deciding what treatment that is possible best suits the needs
of the patient as the patient understands those needs. As the discussion continues,
keep in mind that our goal is to go further than the usual idea of advance directives.
Inappropriate resuscitation and other end-of-life treatment producing unnecessary
suffering and bad deaths continues to be an all too common problem, mocking the
triumphalism of high technology medicine.
52
Nothing insures better than advance directives that patients with Hfe-threatening
disease, terminal illness, or the final stages of inevitably progressive dementias will
receive treatment appropriate to their disease, the capacities of medicine, and their
wishes. In spite of the Patient's Self-Determination Act which should apply to the
vast majority of patients in the United States, only a minority of patients have
them. Why, when they are so crucial, is that the case. There are several reasons.
1. Inertia, apathy, indifference, and fear on the part of patients.
2. Ignorance among patients, physicians, and other caregivers.
3. Lack of incentives for physicians and other caregivers.
4. Administrative and other difficulties.
5. A wrong idea of what an advance directive should do.
Many Americans, who do not sign an advance directive, are aware of the problem
of inappropriate resuscitation, life support or treatment at the end of life. Court
cases have received publicity, television and print media commonly discuss these is-
sues, and people discuss them with their friends and family. When it comes time
to sign an advance directive or appoint a surrogate, many seem to hold back. People
know that everybody dies, but it is as if it is an event, something that will just hap-
pen. They do not seem to see their deaths as something in which they can play a
part, which, because of their actions could be better or worse, or even come about
in a desirable manner. I routinely ask my patients to appoint a Health-Care Proxy
according to New York State law. The procedure is simple, the document is straight
forward, and I strongly encourage it. Surprisingly often, the document does not get
filled out. Sometimes people think I am covertly telling them something negative
about their prognosis and have to be reassured. We must accept the existence of
these impediments to advance directives as a problem to be solved.
Despite the currency of the problem in American life, there is considerable igno-
rance about the availability, the importance, and the effect of an advance directive
and the appointment of a surrogate decision-maker. People must understand that
this is not only something that they do for themselves, but for their family. Like
estate planning, many family difficulties can be resolved — even money saved — by an
advance directive. Physicians are often as ignorant as their patients about the uses
of advanced directive, ignorant of the fact that a surrogate speaks with the patient's
voice when the patient has lost capacity, or that when a patient chooses not to be
resuscitated, he or she has not chosen not to be treated. Advance directives should
be the subject of a sophisticated, widespread, and continuing educational program.
Patient education always ends up educating physicians. When patients in sufficient
numbers ask their doctors for the forms, they will be available.
Incentives get things done. Medicare should have a procedure code that applies
to obtaining an advanced directive. The procedure should be reimbursable apart
from the visit in which it occurs. The reimbursement should be adequate. It will
save Medicare money in the long run. Other third-party payors should do the same
thing, they too will save money.
It appeared that the Patient Self-Determination Act would succeed since it was
to become part of the procedure of being admitted to the hospital or other health
care facility. This has not worked. The document should be part of the patient's
record, in front of the chart, until its purpose has been accomplished or the patient
declines. It should be the responsibility of the attending physician or the physician
of record.
Finally, the object of these documents should not primarily be finding out what
the patient does not want, or refuses — for example resuscitation, respirators, or
feeding tubes — although such information might be important, but what kind of care
the patient does want and what is important to the patient. Too often sick persons
are asked to make choices about technical issues concerning resuscitation, res-
pirators, and the like about which they know very little. On the other hand, the
thing they, and only they, know about, what matters to them, gets left off. My ad-
vance directive says that if and when my physicians no longer believe, with reason-
able certainty, that I can return home able to read and write or with that fair expec-
tation, they should discontinue treatment. The technical issues in those decisions
are both their expertise and their problem, not mine. Other patients say that they
want to be able to think, or at least remain conscious and aware of their surround-
ings. A rare patient wants to remain alive no matter state he or she is in. I believe
it is my obligation to act on those wishes, and the obligation of every physician. It
is much easier to ask the questions that gets that information than asking whether
they want to be resuscitated. Usually that follows from what the patient says. In
general, the process of finding out about end of life care is continuous with all other
diagnostic and therapeutic decisions in which the patient should be playing an ac-
tive part.
53
No administrative solution exists to remedy the too frequent problem of death
after unrelieved suflFering. The understanding that effective pain control is the sine
que non of adequate care of the dying has begun. to spread around the country. The
technology and medications necessary to achieve that goal are ubiquitous and inex-
pensive. Death after unrelieved pain, however, remains too common. Further, the
concepts that provide the basis for pain control are usually not extended to other
symptoms. Suffering itself, a distress distinct from but often elicited by pain and
other symptoms, is rarely explicitly addressed. Suffering is always lonely, unique in
its fashion to the individual, and arising from the sick person as a person. It puts
to lie any attempt to separate mind from body, the psychological from the physical,
the personal from the social. There are no technologies for its relief, it can only be
treated by physicians or other caregivers explicitly devoting themselves to the relief
of suffering. Virtually all of the goals of the care of the dying are exemplified by
the hospice movement. Its ideas, knowledge, and skills are as applicable to the care
of any sick person as to the terminally ill, yet these have not spread to the rest of
medicine.
For physicians to properly care for the dying in any setting as well as helping the
patient choose treatment requires a therapeutic relationship between doctor and pa-
tient. While it is desirable to establish a long lasting relationship with a physician,
that is not necessary, the relationship can be of recent origin. The physician must
understand his or her functions as always arising from a therapeutic relationship.
This is an understanding that must be taught during medical training and rein-
forced at every opportunity.
The Senate Finance Committee will soon be considering legislation that will have
an enormous impact on the possibility for physicians to form and maintain thera-
peutic relationships with their patients. The structure of health care reform will ei-
ther encourage doctor-patient relationships in which patients' right to choose in con-
cert with their physicians can become a reality or discourage such crucial bonds.
There is no neutral stance. Medicine cannot move forward past its present over-uti-
lization of technology and subspeciality medicine without a return to its fundamen-
tal basis in the relationship between patient and doctor. The present problem with
end of life decisions is merely one symptom of our departure from that foundation
of medical care.
54
Prepared Statement of Ezekiel J. Emanuel, M.D., Ph.D.
Just because we are spending a lot of money on patients >viio die. does not mean that we
can save a lot of monev on end of life care.
There is a widespread perception that the medical care we provide Americans at the end
of life is irrational and unjustifiable; both ethical and economic considerations urge us to reduce
medical mterventions for dying patients.
One can find this view expressed by prominent physicians, leading health policy analysts,
members of the lay public, and throughout the media. '•^^•''■'■*' For example. George Lundberg.
editor of JAMA has written:
1 believe that by developing and implementing such guidelines to prevent futile
care, evervone wins— the patient the family, and society as a whole, the financial
savings (in addition to the obvious humaniianan benefits) resulting irom
widespread implementation of such policies is impossible to predict but certainly
tens and probably scores of billions of dollars annually could be saved'
Leading health economists such as Eli Ginzberg of Columbia have decried "the high cost of
dying." Our current Surgeon General is quoted as saying that: "[S]ome 70 to 90 percent of our
health-care dollar is spent on the last few months of life."'^ And at least one leading member of
President Clinton's Health Care Task Force argued during some of the debates last spring that
reducing medical interventions for dying patients was one of the two main mechanisms to cut
the waste out of the medical cars system and finance universal coverage.
Op-ed page editorials that have appeared in The New York Times and The Washington
Post within the last 9 months have proclaiined: "Good ethics, good health economics" and argued
that the use of living wills is key to saving the health care system finances.'""
Is this widespread perception true? Are we wasting scores of billions of dollars on dying
patients which could otherwise be spent on providing care for the uninsured?
WHAT DATA SUPPORT THE CLAIM THAT WE ARE WASTING MONEY ON DYING
PATIENTS?
Where does this perception that we are spending too much on dying patients come
fix)m?
It rests on three related claims. First, it is claimed we are spending too much money
on medical care for dving patients. The data used to support this idea comes from excellent
studies on Medicare expenditures for dving patients. A series of studies dating back to the
late 1970s and most recently reviewing Medicare expenditures for 1988 demonstrate 1) that
55
Cost Savings at the End of Life
Page 2
bemeen 5 and 6% of all Medicare beneficiaries die each year and 2) that these d\ ing patients
consume beuveen 27 and 30% of the entire Medicare budget. '^'^■'■' The latest available
figures indicate that in 1988 mean Medicare payments for the last year of life of Medicare
decedents was S13.316, compared to $1,924 for all Medicare beneficiaries (a ratio of 6.9).
Indeed, the use of medical resources rises significantly as patients approach death, such that
fiallv 40% of all spending in the last year of a patient's life occurs in the last 30 days of life.
Importantly, these trends and ratios are not new. Similar figures date back to the early 1960s
and the implementation of Medicare.
These data on Medicare expenditures for dying patients are the best data available in
the United States and they have shaped our view of how much we spend on the mtsdical care
at the end of life. (It is worth noting that the best available data is now 6 years old-a period
in which health care expenditures nearly doubled going fix)m $544 billion in 1988 to almost
$1 trillion in 1994. This is a sad comment on our system's ability to provide accurate data
for health policy decision-making.)
Second, it is claimed that the vast majority of Americans actually want fewer medical
interventions at the end of life-that is do not want to be attached to respirators and other
machines prolonging life. Consequently, their autonomy and satisfaction with medical care
will actually be enhanced with fewer treatments at the end of life. We have studied patients
at the Massachusetts General Hospital and members of the general public in Boston and
found that on average 73% of both patients and the public did not want a respirator and 74%
did not want artificial feedings. In the woi5t prognosis situation, persistent vegetative state
80% of respondents refused respiratore and artificial feedings."
Many other studies, fix)m opinion polls of the general public to more focused
interviews of patients, have demonstrated sli^y different results depending upon the study
population, the specific wording of the question, and the interventions being considered
Without summarizing the numenxis studies, it is fair to say that between 60 and 80% of
Americans would refuse medical interventions at the end of life with older patients tending to
want more treatments-OT defer to their physician or family more oflen-than younger patients.
Third, it is claimed that we can save a significant amount of money by reducing
medical care for dying patients. Most of the support for this claim comes fi^m combining
information on the amount we spend on the medical care of patients who die and their
preference for not wanting life-sustaining medical intaventions. For instance, the most
sophisticated version attempting to quantify how much could be saved comes fiom Drs.
Singer and Lowy in which they "perfomied a thought experiment examining the cost impact
of offering advance directives to the general public.'"* They argue that in 1990 the U.S.
spend $661 billion on health care.
56
Cost Savings at the End of Life
Page 3
[Using the Medicare data showing that] 27.9% of annual health spending flows
to the 5.9% of enrollees who die in that year, approximately SI 84 billion was
spent in 1990 on patients who died [and] SI 09 billion was spent in 1990 on
patients who, if asked, would have declined life-sustaining treatments.. ..If we
assume an average 50% reduction in costs for patients who choose to forego
life-sustaining treatments, then S55 billion might have been saved in 1990 U.S.
health spending ...fix)m a policy of asking all patients about their wishes
regarding life-sustaining treatment and incorporating those wishes into advance
directives. ,■
ARE WE WASTING MOVfEY ON MEDICAL CARE FOR THE DYING?
ARE THESE ESTIMAIES SHOWING WE CAN SAVE MONEY AT THE END OF LIFE
IRUE?
First, it should be noted that the Medicare data provides us with a distorted and biased
view of how much we spend on medical care for dying patients. The Medicare data is for
patients 65 years and older— a segment of the population more likely to die. Thus between 5
and 6% of Medicare beneficiaries die each year and constitute almost 70% of all Amencans
who die. By contrast, less than 1% of all Americans die. This means that we cannot simply
extrapolate, as many have done, the 27 to 30% of the Medicare budget paying for patients
who die to the entire medical care system and assert that 27% of all $1 trillion spent on
health care goes to dying patients. While 5% of Medicare beneficiaries who die may
consume 27% of the Medicare budget it is highly unlikely that less than 1% of Amencans
who die consume 27% of all health care spending. By our estimate (which is higher than the
estimate of some senior analysts at HCFA), the 1% of Americans who die in any calendar
year use approximately 10% of health care spending.
In addition, it is important to note that Nfcdicare does not cover all health care costs
even for those over 65 years of age. Medicare does not pay for nursing home care,
prescription drugs, many physician oflBce visits and other medical services. Indeed, Medicare
co\ ers only 45% of the health care costs of Medicare beneficiaries. Patients who do not die
may very well use more of these uncovered services than patients who do die. This again
may inflate the proporticMi of health care expenditures going to patients who die.
Second while in survey questions the majority of Americans want to forego life-
sustaining treatments, we must be hesitant about extrapolating these data too easily. It is now
fashionable to refiise life-sustaining care; it is the defaoilt answer in our popular culture. Yet
we know that there is a big difference betweai answering these questions in a survey and
taking such actioa For instance, despite the fact that more than 70% of Americans say they
want living wills or other form of advance care directives, despite the fact that these
57
Cost Savings at the End of Life
Page 4
documents have received extensive media publicitv', are readily available at little or no cost
and are gi\ en out during hospital admissions, only 25% of the population and patients
recently discharged from the hospital has completed such advance care documents.''
Completing an advance care dirolive and actually refusing care is much more difficult-
psychologically, emotionally and it seems practically-than answering a question in a survey.
This casts doubt on the likelihood of such a large majority of Americans reftising life-
siistaining medical treatments in actuality.
It also might be compared with the use of hospice among Medicare patients. Since
1982 and the passage of the Tax Eqtiity and Fiscal Responsibility Act, Medicare covers
hospice care. In 1992, 154,000 Medicare beneficiaries or rougjily 10% of Medicare patients
who die utilize hospice care at the end of life (personal communication Paul Eggeis, HCFA).
This number has been rapidly rising over the last five years, yet it still remains a small
proportion of total patients who die.
Furthermore, there are a significant minority of patients who do not want to refuse
life-sustaining treatments even under dire-some migjit say ftitile-conditions. Many studies
have shown that about 20% of Americans want "everything" done even if they are in a
persistent vegetative state. Indeed many recent legal cases, from the Wanglie case in
Minnesota, to the recent cases of the family who took a brain dead girl home on a respirator,
attest to the fact that significmt minority of Americans do want life-sustaining treatments
come what may. Importantly, surveys among AIDS patients— one of the most costly group of
d\ ing patients-show that about 50% want cardio-pulmonary resuscitation and intensive care
even under ciroimstances in which their chances for survival are less than 15%..'*-" A story
may convey the issues as well as any statistics. One of my Amherst College classmates
contract AIDS. His obituary tells that
He told his family he wanted them to take whatever measures were available to
sustain his life. He told me he felt robbed by the virus and refused to
succumb. Until the very end, he stubbcxnly clung to life and tried to hang on
as long as possible.^
Also not all advaiKC care planning is created equal in terms of refusing life-sustaining
treatments. Many studies have shown that patients' family members and proxies are more
reluctant to stop life^sustaining treatments.^'-^ Therefore, if we advocate proxy decision-
making as the best form of advance care planning, as many have done, the proportion of
patients for whom we would withdraw treatment will be smaller-probably less than 50%-
and the cost savings would be commensurately less.
Finally, there is not much data that s'jpports the notion of significant cost savings by
reducing life-sustaining treatments. The studies that are available suggest at best, under the
58
Cost Savings at the End of Life
Pages
most wildly optimistic scenario, we could reduce costs during the last 6 months of life by
IT/a through the use of advance care directives, home hospice, and the elimination of futile
care.
Before considering these studies in some detail it is worth noting there is no single
reliable and valid study of this issue. Ail the available studies have significant limitations,
few are randomized trials; most are small involving only a few hundred patients; most focus
only on the terminal hospitalization rather than total health care costs; and costs are frequently
estimated rather than directly measured. Nevertheless, these studies all point in the same
direaion: there will be little cost savings by limiting end of life care.
Use of Advance Care Directives: Three studies— of which one is randomized-examined
whether the use of advance care directives can reduce medical care costs for patients who die.
The only randomized trial of use of advance care documents occurred at two hospitals in San
Diego and involved only 204 patients.^ It randomized patients to either receive a discussion
by their physician of the California Durable Power of Attorney or no special discussion and
assessed the cost of care over the last six months of life. The study had a negative result:
"executing the California IXirable Power of Attomey for Health Care and having a summary-
copy placed in the patient's medical record had no significant positive or negative eflFect on a
patient's well-being, health status, medical treatments, or medical treatment charges."^'
Autfaois
Year of
Study
End of Life Costs
witfaACD
Fiid of Life Costs
without ACD
Percent Saviii|^ by
Using ACD
Schneiderman et al.
1987-89
$59,000
$42,000
Teno et al.
S61,589
$56,300
Chambers et al.
1990-92
$30,478
$95,305
68%
The SUPPORT study examined the costs of the final hospitalization of 854 patients
who died in five separate hospitals across the United States (Teno et al.). Having an advance
directive did not significantly eflFect the costs of patients' terminal hospitalization. Hospital
bills for those without an advance directive were $56,300 versus $61,589 for those with a
living will and $58,346 for those with a durable power of attorney.'*
The study by Chambers et al. retrospectively reviewed the deaths of 474 Nfcdicare
patients in Philadelphia and found that the final hospitalization of those patients with an
59
Cost Savings at the End of Life
Rage 6
advance care directive mentioned in the chart cost significantly less than those without one.
There is some question whether all patients who had an advance care document were properly
classified and it also suggests that sicker patients had an advance care document. While the
Chambers study is suggestive it needs to be considered in the perspective of these other
studies w+iich showed not savings fix>m use of advance care documents.
Hospice: Hospice patients are known to be terminally ill. refuse life-sustaining medical
treatments, and often have care at home. There are several studies on whether the use of
hospice care actually saves money."^-^"^'^*^-^ The one randomized study was conduaed at a
VA hospital in California. The study involved 247 cancer patients randomized either to
hospice or conventional care. It showed that there was no savings from hospice care.
The National Hospice Study was not randomized and studied 5.853 Medicare patients
with cancer of which 3.641 used home care hospice. It showed that in the last month of life
home hospice was 43% less expensive than conventional medical care. But that the longer
patients were in hospice, the savings were much less. So that in the last 6 months of life
patient in home hospice saved approximately 27% compared to pjatients with conventional
care, while patients in hospital bitsed hospice saved less than 15%
Author
Year of Study
End of Life Costs
wHfa Hospice
End of Life Costs
without Hospice
Percent Savings
by Using Hospice
VA Study
$15,262
$15,493
National Hospice
Study
1980-83
$ 7,719
$11,729
27%
It is worth noting that about 25% of patients on hospice still are hospitalized during
their period on hospice. As noted above the use of hospice has significantly grown over the
last five years. Medicare Hara demonstrate that 44,000 Nfedicare patients used hospice in
1988 and over 150,000 used hospice in 1992. In addition the length of stay on hospice has
also significantly increased In 1988 Medicare hospice patients stayed on hospice for an
average just 37 days. In 1992 hospice patients stayed on hospice for 57 days. Remembering
that the longer patients stay on hospice after one month the lower the savings, this trend
implies lower cost savings per patient than in psevious studies.
60
Cost Savings at the End of Life
Page 7
Eliminating Ftitile Care: What constitutes futile care is controversial. But there are some
areas that seem less controversial than others. For instance, many people claim that
resuscitating patients with cancer is llitile. While there is there is no cost stud>' of eliminating
resuscitation for oncology patients there is a study from the Cleveland Clinic of the cost of
care for all patients with Do Not Resuscitate (DNR) orders, almost 25% of whom had cancer.
This study involved 852 patients and looked at the cost of the final hospitalization. It found
that patients who were DNR cost about the same as non-DNR patients who died: S62,594 for
616 DNR patients versus $57,334 for 219 non-DNR patients who died.^'
Other people might consider chemotherapy for lung cancer a futile therapy.
Chemotherapy for unresectable non-small cell lung cancer is an example of marginal if not
entirely flrtile therapy: it does not seem to systematically enhance longevity, impro^/e quality-
of-life or palliate pain.^"^ A Canadian randomized trial comparing chemotherapy with quality
supportive care for patients with non-small cell lung cancer found that the average cost of the
supportive care was $8,594.85 (1984 Canadian dollars) while one chemotherapy rej^en cost
less-$7,645.36-and another regimen cost more-$ 12,232.45.^ Aspects of this suid)' are
controversial and some costs required approximations because they are "not routinely
identified in the Canadian health care system."^*^' Nevertheless, the authors conclutie that
even if chemotherapy is expensive, "a policy of supportive care for patients with advanced
NSCLC was associ^ed with substantial costs."^*
HOW MUCH CAN WE SAVE FROM G5«ATER USE OF ADVANCE C\RE
DIRECnVES, HOSPKE, AND FEWER FUTILE INTERVENTIONS?
Predicting how much we could save by wider use of advance care direaives.. hospice
care, and fewer futile interventions is at best speculative, requiring many assumptions,
extrapolations from limited data, and educated guessing. But even making the wildly
optimistic assumptions that 1 ) all Americans complete an advance care directive, 2) reflise
aggressive life-sustaining interventions, and 3) take terminal care througji home hospice the
savings are likely to be small.
We know that 2.17 million Americans died in 1988, of which 1.49 million were
Medicare beneficiaries. Using the hospice data, let us assume that the maximum we mi^t
save in health care costs during the last year of life by reducing end-of-life interventions is
27%.-"^
Using estimates for the cost of medical care during the last year of life and these
assumptions, we can calculate how much can be saved if each of the 2. 17 million Americans
who died used advance directives, hospice and refused aggressive, in-hospital, end-of-life
interventions. As the table shows, the total savings in the health care budget would have
61
Cost Savings at the End of Life
P»»ge8
been S18.1 billion in 1988 or 3.3% of all headi care spending. In 1988, the Medicare savings
would have been $5.4 billion or 6.1% of expenditures.^* Since the percent of health dollars
spent on decedents has been constant over 30 years, the savings as a percent of the national
health budget and Medicare are unlikely to change over time."
OVERALL HEALTH CARE
SYSTEM
MEDICARE
Under 65
65 and Over
Number of patients who died in 1988
0.68 miiliOT
1.49 million
1.49 million
Average annual health care cost per
dying patient
$34,102
$29,295
$13,316
27% savings feom use of advance
directives, hospice and less aggressive
interventions by ail patients
$ 9,208
$ 7,910
$ 3,595
Absolute dollar savings from use of
advance directives, and hospice and less
aggressive interventions by all patients
$6.3
billion
$11.8 billion
$ 5.4 billion
1988 Health Care Spending
$546 billion
$88.5 billion
Percentage of health care spending
saved from greater use of advance
directives, hospice and less aggressive
interventions
3.3%
6.1%
Some may look at these figures and conclude that 3.3% of the health care budget
amounts to almost $30 billion and is a huge savings. This conclusion is not just a matter of
perspective on a set of data. It is taking a fantasy for potential reality. The purpose of this
calculation is not to show what is possible if we work hard, but rather how little extra savings
can be had even if we could wish our ideal.
For many reasons this fantasy is not likely to develop. As I have already noted, it is
highly dubious that all Americans will use advance care directives and refuse life-sustaining
care. We already know that at least 20% of Americans reject this. Further, as noted above
only about 10% of Medicare beneficiaries us hospice evai thought it is available and covered
by Medicare and has been for 12 years. Furthermore, evai if we could realize these large
85-568 0-95-3
62
Cost Savings at the End of Life
ftige9
savings, there would be no windfall. As the health economist Rashi Fein has noted about
other proposed cost saving changes that involve changes in medical practice: "the savings
would occur only over a number of years." Achieving 5 or 6 billion in savings each year for
five years is significant but likely to be dwarfed by simple health care inflation.
WHY ARE THE SAVINGS ATTHE E3SD OF LIFE LESS THAN ^\E EXPECT?
There are at least five reasons that the prediction of scores of billions of dollars of
savings from eliminating wastefiil end of life care made by physicians, health policy analysts,
the public and the media are wrong. We have already indicted some of them.
First, our best data on cost of care for pjadents who die comes from Medicare and the
Medicare statistics are not readily extrapolated to the whole health care system Medicare
makes us think we are spending a great deal and therefore can save a great deal. We are
spending only 10% of all health care expenditures on end of life care. Thus even a large
percentage decrease in this spending is a small fraction of the total health care budget.
Secoid, as we have stated many Americans Just do not desire less aggressive medical
care at the end of life.
Third, it is worth noting that we have undergone a revolution in the provision of
health care to dying patients over the last decade. Currently almost 80% of patients in large
hospitals die without "everything" being done for thera^*^*' Among cancer patients, in fact,
as many as 97.5% die without resuscitatioa*' We are already withdrawing and withholding
life-sustaining treatments for the vast miyority of people. While there might be more
interventions that can be stopped, it is fewer than we think and therefore the savings are
likely to be less than we think.
Fourth, death is unpredictable. The statistics we have from Medicare and other studies
provide us the cost of patients who died. We know that they die after the fact and then look
back to find out how much medical care the used. As Anne Scitovsky has argued:
Nfost of these studies deal not with the "high cost of dyingf of ' terminal
patients but with medical care expenditures at the end of life, generally in the
last six months of life. It is easy enou^ of course, to designate a patient as
terminal or as dying retrospectively but an entirely different matter to do so
prospectively.
This means that when 1994 started we did not know who would die and who would not. For
only a few diseases, most notably some cancers and AIDS, can we accurately predict weeks
63
Cost Savings at the End of Life
PSf^elO
or months in advance who will do well and who is likely to die. But for most other causes of
death, including heart disease and stroke which account for about half of all deaths, the end is
sudden and unpredictable. Indeed who would have predicted Richard Nixon would die in
April 1994 of a stroke. And even after the initial stroke who knew with accuracy he would
die five days later.
The inability to know who is terminal and likely to die with any accuracy makes it
hard to know when to stop medical treatments. In the face of this uncertainty we-physicians.
patients, and family-are likely to err on the side of treating and withdraw only after it is clear
that the patient is likely to die. This approach means there will be less cost savings that we
might predict by looking at the cost figures after we can identify who dies.
Finally and most importantly, just because we are willing to stop providing high-
technology life-sustaining care for patients at the end of life does not mean that they require
no medical care at all. When we stop life-sustaining treatments patients just do not simply
die. Depending upon the disease, patients who reftise life-sustaining care can still live weeks,
months even a year. For example, the median survival of patients with metastatic lung cancer
is about 6 months. Half will live more than six months even if they reftise life-sustaining
care. The dying patients still require higji quality, and dignified cornfort care over this period
Even if it is not high technology, this comfort care is not cheap. A patient with metastatic
lung cancer refusing life-sustaining treatments but getting comfort measures may require
radiation therapy for painful bone metastases; intravenous pain medications; siqiplemental
oxygen to reduce air hunger, and other medications and treatments. Such comfort care is
labor intensive and not cheap. It may also be useftil to note that even among hospice
patients about 25% end up using in-hospital services while they arc on hospice.
We cannot on the one hand lecture f^ysicians about providing high quality, dignified
comfort care and pain management to dying patients and then on the other hand berate them
for the faa that medical care for these dying patients will cost significant sums of money.
axsojusioN
None of the studies of end of life care is definitive. But almost all of them point in
the same direction showing tiiat there is unlikely to be a windfall in savings by use of
advance care documents, more hospice and less aggressive life-sustaining treatments. We
certainly could use better-especially randomi25ed-studies of the cost of dying. Before we
have definitive data on this we should not count on this money to finance health care reform.
To reiterate the main point: Just becatise we spend a lot of money on dying patients
does not mean we can save a lot of money.
64
REFERENCES
1. Leaf A. Medicine and the aged. New Fngland Journal of Medicine 1977;297:887-890.
2. Tumbull AD, Carlon G, Baron R, Sichel W. Young C. Howland W. The inverse
relationship between cost and survival in the critically ill cancer patient. Critical Care
Mslifiine 1979;7:20-23.
3. Ginzberg E. The high cost of dying. Inquim 1980;17:293-5.
4. Schroeder SA. Showstack JA. Roberts J. Survival of adult hi^ cost patients. JAMA
1981;245:1446-1449.
5. Bayer R, Callahan D, Fletcher J, Hodgson T, Jennings B, Nfonsees D, Sieverts S. Veatch
R. The care of the terminally ill: nxjrality and economics. New England Journal of Medicine
1983;309:1490-94.
6. Scitovsky AA. "The hi^ cost of dying": what do the data show? Milbank Memorial Fund
QuaOfitlX 1984;62:591-608.
7. Scitovsky AA. Capron A. Medical care at die end of life: the interaction of economics and
ethics. Annual Review of Public Health 1986:7:59-75.
8. Lundberg CD. American health care system amanagement objectives. JAMA
1993;269:2554-2555.
9. Godec MS. Your final 30 days-free. Washington Post May 2, 1993;C3.
10. d'Oronzio JC. Good ethics, good health economics. New York Times June 8, 1993;A25.
11. Frye A. Living wills as your last testament The Washin g ton Post January 2, 1994;C3.
12. Lubitz JD, Riley GF. Trends in Medicare payments in the last year of life. New Fji gland
Journal of Medicine 1993;328:1092-6.
13. Lubitz J, Prihoda R. The use and costs of Medicare services in the last 2 years of life. Halth
Care FinanceReview 1984;5:117-131.
14. McCall N. Utilization and cost of Medicare services by beneficiaries in their last year of life.
Medical Care 1984;22:329-342.
15. Emanuel LL, Barry MJ, Stoeckle JD, Ettelson LM, Emanuel EJ. Advance direaives for
medical care-a case for greater use. New Fngland Journal of Medicine 1991;324:889-895.
16. Singer PA, Lowy FR Rationing, patient preferences, and cost of care at the end of life.
Archives of Internal Medicine 1992; 152:478^80.
65
17. Emanuel EI, Wemberg DS, Gonin R. Hummel LR. Emanuel LL. How well is the patient self-
determination aa woridng?: an early assessment. American Jnumal of Medicine 1993;95:619-628.
18. Steinbrook R, Lo B, Moulton J, Saika G. Hollander R Volberding PA. Preferences of
homosexual men with AIDS for life-sustaining treatment. New England Journal of Medicine
1986:314:457-460.
19. Haas JS, Weissman JS. Cleary PD, et al. Discussion of preferences for life-sustaining care
by persons with AIDS. Archives of Internal Medicine 1993;153:1241-1248.
20. Anderson CL. Amhsd Winter 1993/94;71.
21. Emanuel EJ, Emanuel LL. Proxy decision making for incompetent patients: an ethical and
empirical analysis. JAMA 1992;267:2067-2071.
22. Steiber SR. Ri^t to die: public balks at deciding for others. Hospiials 1987;61:72.
23. Schneiderman LI, Kronick R, Kaplan RM, Anderson JP, Langer RD. Effects of oflFering
advance direaives on medical treatments and costs. Annals of Internal Medicine 1992;! 17: 599-
606.
24. Teno J, Lynn J, Phillips R, Youngner S, Connors A, Oye B, Desbiens N, Fulkereon W. Knaus
W, and the SUPPORT Investigators. Do advance directives save resources? Clinical Research
1993 ;41:551 Abstract.
25. Kidder D. The effects of hospice coverage on Medicare expenditures. Health Services
Rs^Kh 1992; 195-217.
26. Kane RL, Wales J, Bernstein L, Leibowitz A, Kaplan S. A randomized controlled trial of
hospice care. I.ancet 1984;i:890-894.
27. Spector WD, Mor V. Utilization and charges for terminal cancer patients in Rhode Island.
Inquiii: 1984;21:328-337.
28. Hannan EL, QConnell JF. An evaluation of hospices in the New York state hospice
demonstration program. Inquilj: 1984;21:338-348.
29. Mor V, Kidder D. Cost savings in hospice: final results of the national hospice study. Uallh
Services Research 1985;20:407-*22.
30. Brooks C, Smyth-Staruch K. Hospice home care cost savings to third party insurers. Malical
CaE 1984;22:691-703.
31. Maksoud A, Jahnigen DW, Skibinski Q. Do not resuscitate orders and the cost of death.
Archives of Internal Medicine 1993;153:1249-1253.
32. indhe DC. Chemotherapy of lung cancer. New England Tmimal of Medicine 1992;327:1434-
1441.
66
33. Ruckdeschel JC. Is chemotherapy for metastatic nonsmaJl-cell lung cancer "worth it"? Journal
of riinir.al Oncology 1990;8:1293-1296.
34. Jaakkimainen L, Goodwin PJ, Pater J. Warde P, Murray N, Rapp E. Counting the costs of
chemotherapy in a national cancer institute of Canada randomized trial in nonsmall-cell lung
cancer. .Inumal of Clinical Oncology 1990;8:1301-1309.
35. Rapp E, Pater JL, Willan A, et al. Chemotherapy can prolong suryiyal in patients with
advancal non-small-cell lung cancer-report of a Canadian multicenter randomized trial. loumal
of Clinical Oncology 1988;6:633-641.
36. Leyit KR, Lazenby HC, Cowan CA, Letsch SW. National health expenditures. 1990. Ueallh
Care Finance Reyiew 1991;13:29-54.
37. Newhouse JP. An iconoclastic view of health cost containment Health Affairs 1993; 12
supp:152-171.
38. Gleeson K, Wise S. The dono-resuscitate order still too little too late? Archiyes of Internal
Msdicins 1990;150:1057-1060.
39. Smedira NG, Evans BH, Grais LS, et al. Withholding and withdrawal of life support fiom
the critically ill. New England Journal of Medicine 1990;322:309-315.
40. Bedell S, Pelle D, Maher PL, Cleary PD. Do-not-resuscitate orders for critically ill patients
in the hospital: how are they used and what is their impact? JAMA 1986;256:233-7.
41. Vitelli CE, Cooper K, Rogatko A, Brennan MP. Cardiopulmonary resuscitation and the
patient with cancer. Journal of Clinical Oncology 1991;9:111-5.
67
Prepared Statement of Melvin Konner, M.D., Ph.D.
Mv name is Melvin Konner, and I leach human biology and medical anthropology
at Emory University in AUanta. I hold PLD. and MD. degrees from another noted
ixmituiion of higher learning where, after six years on the faculty, I attended medical
school I have authored three boolcs on the relarionsbip between medicine and sociecy,^-^
and have taught for many years about it I undcrstarul the viewpoint of die practicing
physician, bnt I get no portion of my income from the delivery of care, and so have no
special interest in the economic results of reform. Due to some serious illnesses in my
immediate family, I also know how it feels to be on the other end of the stethoscope. My
testimony reflects only my own opinion, not that of any institution or organization. It is a
privilege to have yonr attention even briefly.
Robert Frost is known for many serious works, but my favorite may just be the
following late, mischievous two-line poem:^
Forgive, Lord, my liole jokes on Thee,
And m forgive Tliy great big one on me.
The big jo):e is, presumably, mortality; and although the Almighty may occasionally find it
funny, hiunans rarely do. In fact, some philosophers have argued that we humans spend
our hves, energies, and fortunes in a massive effort that combines posq)onemcnt with
denial. Certainly in medicine the assaolt on mortality is our mission, our obsession, and
our dream. Bnt the philosophical questions remaiiL What happens when the length of life
is at odds with its quality, when, in Hamlet's words, we face tte "calamity of so long life?"
And who will bear the awesome resp^Misibility of judging when life has been too long?
But modem medicine and its technologies raise a new question, one that Hamlet
could not have thought of. What happens when medicine gives us so much control over
dying that the idea cf a nabiral order of thin^ slowly loses its meaning? Among ihc IKung
San. or Bushmen, whom I lived with in Afoca, control over dying is so feeble that they
would never dream of our problem-an ediical dilemma coixxming when to let people die.
Indeed, throughout human history undl the last few decades, no such conundrum could
have existed. Science has presented us with a new kind of dUenmia, one thai requhrs a
new kind of ethical reasomng.
None of us, of course, would go back in time to an era when mortality made life so
precarious. But we do need to realize that it has not been the advance of medical
technology that caused most of the reduction in monality in modem times. Rather, it has
been primarily improvements in the quality of life-nutrition, sanitation, housing, work
conditions, and so on-tibat have defeated the great killers of the past llie role of new
technologies has been more dramatic, but much less important
Good people can legidmaicly differ about how we should view the end of life.
There appears to be agreement that competent adults have the right to refuse treatment a
consensus embodied in The Patient Self-Determination Act^ There is growing acceptance
of legal instruments such as the living will and the durable power of auoraey for health
care, designed to prevent unwanted treatments in the event of a person's loss of
competence.* And in some cases, such as that of Nancy Cruzan, courts have accepted
other evidence of an incompetent patient's wishes. The Cruzan decision also extended,
righUy I think, the boimdary of what we view as technological interveniion, to include
artificial feeding and hydraiiocL'^ Meanwhile, Derek Humphry.^ the Hemlock Society, and
of course Dr. Jack Kevorkian have acted, sometimes with disregard for the law, to try to
push the boundaries of the right to rcfiose treatment until they encompass a right to die, a
68
right to tain one's own life, and even a right to be assisted bv a phjrsician in such an act of
snicide. And whatever eihiclsts and legislators may think of ihese actions, juries of average
Americons-HDOSt recently just a few days ago^mve consistently refused to punish such acts
when they aie perceived to have a hiimanB motivation.'
But as Dr. Christine Cassel has wisely said, "it is one thin^ to let people die
because their lives have become an inconvenience to them; it is quite another to let them die
because tfaeix lives have become an inconvenience to us."^^ Surely we do not want to
create a moral environment in wiilch seriously ill people, guilty over the inconvenience they
cause us>cJbosB death at a time when life still q)peals to them. Tbe line is easy to cross.
Dr. Carlos Gomez, author of /{e^u/otin; Death, reported on twenty-six casea of cuihaaasia
in tbe Netherlands, where legal strictuxes against this practice are limited.^^ In too many
cases Dr. Oomez found evidence of inadequate treatment of pain, and even more
inadequate tteaiment of depression. In the United States too, it is widelv agreed that
doctors treat pain and depression inadequaiely, even in the tenninally ill. to the point where
a sitting Surgeon General, Dr. Louis SmUvan. was moved to call for a major rdbrm of
practice. Dr. Eric Cassell's dismal assessment of modem doctors is that they have lost
their ability to address human suffering. ^^ The lesson is that before we help people die, we
had better be sure that we have done everything reasonable to help them want tome.
Yet there is a point at which a person may really want to die, and leading physicians
throughout the nation have ezpUcitly recognized that assisted suicide docs and should
somenmes happen under the aegis of physicians. '^ We owe it to physicians, to patients,
and to families to bring this secret out of *hei closet, and to debate pubhciy how we as a
society may Hit at least part of this dreadfiil burden from their shoulders.
Dr. Cassel's warning about the ethics of tbe ice floe brings us to a still more
complex problem: the specter of explicit rationing. Nobody wants rationing, but few have
faced the faa that we have ratiooine now.^^ As a medical student working a what many
consider our nation's best hospital, I saw this rationing in action, as poor people waited in
pain for so many hours that they left without treatment We saw rationiiig too. when
thousands of childien contracted measles in a completely unnecessary epidemic, and some
of them, inexcusably, died of it, because of the disgraceful inadequacy of our nation's
vaccinaiioo programs.
I prefer die rationing to be rational and I prefer the word triage, because it is one
we accept It comes from the French rriager, to sort. Ii is something we know to be ethical
in war or accident or natural disaster, when so many cases descend on medical workers that
they must choose whom they will treat This one is serious, but will live for another day.
This one is worse off, but nothing I do will help him. And oh yes, here is the one I must
care for first, the one who wiQ live only if I do what is needed now. How can we make
such decisions? We must, and so we do.
I believe tbzt we are already in a situation of triage at the societal level. Americans
have decided tiiat they cannot spend much more on health than they spend now-around a
seventh of GNP. Yet forty milUon people have been left out of the system, without logic,
ethics or compassion.
A few years ago the people of Oregon decided to prioritize medical trcaunents-in
effect to triage. Tbe fact that the Bush administration quashed their effort should not be
allowed to obscure what they accomplished. In a bipartisan plan designed by physicians in
the state legislature, after consultation witix countless town meetings around the state, and
with die support of the governor, Oregonians made a list of medical treatments ranked
69
•ccorcHng to their valoe and cXTectiveneu. They did not claim tbat this was easy, Dor did
they diiok they had done it perfBctiy. Thoy can be ciiddzed for pdohtizuig treatments and
rejecting some of Ihcm only for those on Medicaid. But their effort needs to be studied by
all who care about the health of Americans.^
Assuming we become capable of setting priorities, how will we handle end of life
issues? Doctors Ezcldel and Linda Emanuel have shown diat the savings to be gained by
hospice treatraoit in the last year of life are not gicat, although even they conoe(& that
"reducing h eal t h care expcnditoics by 3.3 percent cannot be dismissed lighily."i^ As your
late colleague Senator Duksen said, "a bilHon here, a billion there, and pretty soon you're
talking about real money." With this saving, a third of the oninsured could be covered.
But to focus on the last year misses the point There are inappropriate treatments
throughout [ife-tens of tiiousands of unwairamed coronary bypasses, hysterectomies,
prostatectomies, cesarean sections-the list goes oti.^' These excess procedures not only
waste teiis of billions of dollars, they expose patients to needless risk, discomfort, and
oppoitunity costs of their own. Unquestionably, the money saved from withholding
needless treatments could fund coverage for most of the tminsuied. Most of these savings
would not, in the usual sense, be triggered by end-of-life measures.
But the last year of life does not exhaust the end-of-life issues, and to claim that it
does is disingenuous. Consider my mother's final illness. In August 1990, she suffered a
large stroke that left her bedridden without speech. She bad made it clear diat she would
not want to live long in that kind of shape. Still, my fadier, my brother, and I fought to
get her into a rehab hospital to give ica every chance at recovery. Unfortunately, while
theip she had a second stroke and was iransfcned back to the acute care hospital. The
lehab hospital would not take her back.
Now came the sad choice. Specialists at the hospital wanted to implant a gastric
feeding tube. Herfamily doctor, a longtime friend, advised against it It would fa^ve k^
her alive for years in a humiliating condition. We knew what she would have wanted. We
agonized about it for days, and even consulted a lawyer who bad argued a "right to die'
case before the Florida Supreme Court We decided not to place the tube. Without it, she
could not be accepted b^ a nursing home, and her doctor discharged her to hospice care at
home. She died gently m her ovm room a few weeks later, appropriately medicated to limit
her discomfort
We had respected her wishes. If we had placed the gastric tube, she nught stUl be
alive today, suffering countless indignides and ongoing distress, without hope of
improvement or recovery. She would also have incurred manv medical expenses, some
covered by Medicare, most of which would not have been in tioe last year of life. Yet they
would have resulted from cnd-of-lifc issues, since the end of her life did follow our
decision not to place the tube-as we had suspected it would. So not just last-year-of-life
savings, but perhaps years of savings, resulted from an end-of-life dccisioiL
But of course wc did not make it to save money. On the contrary, while we were
trying to give her her best shot at recovery, wc spent Medicare's money with impunity; and
so. I hope, would everyone. I call this the "whai-if-it's your mother" rule of e:^>eaditurc.
I laiow that an MRI scan costs three times as much as a CAT scan, but that it does not yield
three times the informadon. Still, as a good son. I v^ll Ignore the cost-benefit rados and
insist on the best So will all good sons and daughters, and parents, siblings, and spouses
too. As awareness of the rapidly moving fronder of technology spreads ihroaghout
85-568 0-95-4
70
society, the "what-if-it's-your-mothex* rule will drivs up medical costs until they consume
so much of our resources that we can't do the rest of what we want and need to do.^^
Only a broad social consensus, eventually embodied in law, can slow down this
process, and diat, once again, means tdagc. Not all treatments that patients demand have
equal value, and some have no value. Yet in recent months courts l^ve ordered doctors
and hospitals to provide, against their bcuer judgement, expensive tieatments that have no
proven scientific oicrit lUs is a path that can only lead to disaster, as e3q)anding demand
pushes treatment far bcvond what is reasonable, in a vain attempt to control completely
what, finally, is beyond our control: the hour of our deadu We sorely need more and better
outcome smdics to assess the value of treatments, and practice giudelines to hdp jphysicians
say no when that is the light answer. We must set clear priodtics. IfwcdonX then our
efibitful denial of death will come back one day to haunt our children.
Refeiences
1. Konner, Mclvin. Becoming a Doctor. A Journey of Initiation in Medical SchooL New
York: Viking, 1987.
2. Konner, Melvin. Medidne at the Crossroads: The Crisis in Heaith Care. New York:
Pantheon, 1993.
3. Konner, MclviiL Dear America: A Concerned Doctor Wants You to Know the Truth
About Health Reform. New York: Addison-Wcsley, 1993.
4. Frost, Robert The Poetry of Robert Frost New York: Holt, Rineharu and Winston,
1969.
5. Gate, Fred H. and Gill, Barbara A. The Patient Self-De termination Act:
Implementation Issues and Opportunities. The Annenberg Washington
Program, Communications Policy Studies, Northwestern University, 1991.
6. Daals, Marian, and seven other authors. "A Prospective Study of Advance
Directives for Life-Sustaining Care." New England Journal of Medicine
324M2-%, 1991; Emanuel. Linda L., Barry, Michael L, Stoeckle, John D., Euelson,
Lucy M.. and Emanuel, Ezoklal J. ibid., pp. 889-95; Annas, George J. "The Health
Caic Proxy and the Uving WiU." ibid., 1210-13.
7. Orentllcher, David. "The Right to Die Atter Cruzan." Journal of the
American Medical Association 2<W:2442-6, 1990; Annas, George J. "Nancy
Cnizan and the Right to Die." New England Journal of Medicine 323:610-7, 1992;
Annas, George J., and thirty-five others. "Bioethiclsts' Sutemeat on the U.S.
Supreme Court's Crutan Decision.' ibid., pp. 686-7.
8. Humphry, Derek. Final Exit: The Practicalities of Self-Deliverance and
Assisted Suicide for the Dying. Eugene. Oregon: The Hemlock Society, 1991.
See also Waller, Susan. "Trends in Public Acceptance of Exithanasia
Worldwide." The Euthanasia Review 7:33-47, 1986. Summarizes poll data from
the Harris. Gallup, and other organizations. For an account of the legal
situation In eight countries, see Yamauchi, Masaya, and seven other authors.
-Eutbanasla Around the World." British Medical Journal 304:7-10, 1992.
71
9. MarsoUck, David. 'Kevorkian Trial I& Over, the Debate Isn't.' New York
Times, May 4, 1994, p. A8.
10. CaMel. Christine., In Homer, Paul and Ilohtels. Martha, eda. A Good Old
Age?: The Paradox of Setting Limits. New York: Simon and Schuster, 1990, p. 23.
11. Gomez, Carlos, Regulating Death: Euthanasia and (he Case of the
Netherlands. New Yoric The Free Press, 1991.
12. Caaseil, Eric J. 27l« Nature of Suffering and the Goals of Medicine. New
York: Oxford University. 1991. For an analysis of the modem physician's role
in attending the dying and enabling a good death, see Cassell, Eric J., 'Being
and Becoming Dead," Social Research 59:528-42, 1972,
13. Wanzer, Sidney H. and eleven other authon. "The Physician's
Responsibility Toward Hopelessly IH Patients: A Second Look.' New England
Journal of Medicine 320:844-849, 1989; Mlsbin, Robert J. "Physicians' Aid in
Dying." New England Journal of Medicine 325:1307-11, 1991.
14. Burstln. Helen R.. Llpsitz, Stuart R., and Brennan, Troyen A.,
'Socioeconomic Status and Risk for Substandard Medical Cve,' J AM As pp. 2383-
7; with accompanying editorial by Bindman, Andrew B., and Grufflbach. Kevin,
"America's Safety Net The Wrong Place at the Wrong Tirs'^'';" pp. 2426-7.
15. Eddy, David M. "Oregon's Plan: Should It Be Approved?" Journal of the
American Medical Association 2tf 5:2439-45, 1991; Stelnbrook, Robert, and Lo.
Bernard. "The Oregon Medicaid Demonstration ProJect"WIll It Provide
Adequate Medical Care?" The New England Journal of Medicine 326:340-4, 1992.
16. Emanuel, Ezeklel and Emanuel. Linda L. "The Economics of Dying-The
Illusion of Cost Savings at the End of Life." The New England Journal of
Medicine 330/540-544, 1994.
17. Konncr, Medicine at the Crossroads, Chapter 5, for more information and
references on unwarranted treatments.
18. See Konner, ibid.. Chapter 7, for more information and references on end-
of-life issues.
72
Prepared Statement of Joanne Lynn, M.D., M.A.
I appreciate the opportunity to talk with you this morning about care of persons
near the end of their lives and the role of the federal government in improving their
situation. I am especially interested in conveying to you results of research oy my
group and others in regard to the effects of the Patient Self-Determination Act and
our observations on the avenues that you might pursue to further improve care for
all of us as we die.
I am Joanne Lynn, a physician and Professor of Medicine at Dartmouth Medical
School where I also am engaged in researching health services related to dying per-
sons. For many years, I was the main hospice physician for Washington, u.C., the
Medical Director of The Washington Home here, and the Director of Aging Studies
and Services at The George Washington University. I serve on the Board of Direc-
tors and as the Chair of the Ethics Committee of the American Geriatrics Society.
I was the Assistant Director of the President's Commission for the Study of Ethical
Problems in Medicine and Biomedical and Behavioral Research in the early 1980's
and I have worked extensively on these subjects with the National Center K)r State
Courts, the Commission on Legal Problems of the Elderly of the American Bar Asso-
ciation, and others concerned with the legal, ethical, and health care issues affecting
elderly, disabled, and dying persons. Most important, I have cared for some two
thousand dying persons and I am leading a major study of decision-making for some
ten thousand seriously ill hospitalized patients.
This hearing is intended to review the status of care of the dying, the effects of
the Patient Self-Determination Act, and the Federal role in improving the situation.
I will organize my comments around three key points:
1. The Patient Self-Determination Act has had important effects on improving
state law and perhaps on mitigating costs of certain hospitalizations. Its effects on
improving the care of patients are, thus far, difficult to trace in hospitals, though
the rate of DNR orders in nursing homes has increased dramatically.
2. The care of dying persons evidences serious and troubling shortcomings, and
we do not even have much reliable information about what we face as we die or
how to improve care.
3. The Federal government can have important roles in improving the care of
dying persons and in enhancing patient participation in shaping the plan of care.
1. THE PATIENT SELF-DETERMINATION ACT — EVALUATION
The PSDA, which was implemented on December 1, 1990, mandated three major
endeavors:
a. Most health care providers had to tell patients of their rights under state law
to make medical decisions
b. Each state had to articulate a definitive interpretation of relevant law
c. Providers and states were to provide public and professional education about
decision-making
a. PSDA Mandatory Notice
The PSDA required that providers give notice to patients about their rights to
make decisions, and that providers have policies on how to deal with written ad-
vance directives. These notice provisions have almost certainly increased public and
professional awareness of formal advance directives, (living wills and durable pow-
ers of attorney) and probably has increased completion of these documents. In the
SUPPORT project (The Study to Understand Prognoses and Preferences for Out-
comes and Risks of Treatments, the basic study funded by The Robert Wood John-
son Foundation and the work on advance directives funded by The Agency for
Health Care Policy and Research), we have had the opportunity to study advance
directive use among very seriously ill patients in five U.S. hospitals before and after
the implementation of the PSDA. Before the PSDA, about one in five of our patients
said they had an advance directive, but only a few advance directives were men-
tioned in the medical records and none were kept in the permanent records. Afler
the PSDA, the proportion of patients who say that they have made an advanced di-
rective has increased only slightly, but now nearly one in three are mentioned in
the records and virtually all of these patients' medical records actually contain the
written documents. Our experiences are echoed in the work of others who are find-
ing many more advance directives in medical records, but very little increase in the
rate of documents completed.
However, there is little evidence that advance directives are changing patient care
in hospitals. In SUPPORT, we can find virtually no important effects of having a
living will or a durable power of attorney. Patients with formal advance directives
73
have the same rates as do those without formal advance directives of orders against
trying resuscitation, and of chart documentation of discussions of withholding life-
sustaining medical treatments. Even patients who have living wills and have ex-
pressed preferences to avoid resuscitation have no increased rate of "do not resusci-
tate" orders or of discussion of them. Patients with advance directives in the medical
record have slightly decreased hospital charges, with a median length of stay for
those who died of 16.5 days and hospital charges of $55,000 as compared to a me-
dian stay of 18 days and hospital charges of $59,000 for those without documented
advance directives.
Other research has also found very little evidence of an effect of having an ad-
vance directive. Schniederman, et al., in a randomized trial of counselling for ad-
vance directives, found no effect on multiple endpoints such as patient well-being,
decisions about trying resuscitation, and resource utilization in the month prior to
death. In contrast to our work and Schneiderman's, Chambers et al. reported a sub-
stantial effect of advance directives on hospital charges at one hospital, though that
study does not allow one to infer that the advance directives caused the savings be-
cause one cannot separate decisions to forgo aggressive, treatment from the forces
which led to having an advance directive.
If further studies confirm a substantial cost savings, the source will almost cer-
tainly be better communication between provider and patient and more acknowl-
edgement of the limited prospects for enhanced health with additional interventions.
Certainly there is much room for improvement in communication and understand-
ing. IN SUPPORT, less than half of the advance directive documents placed in the
charts bv the third hospital day were known to the physician when interviewed on
the tentn hospital day. Patients who said they had an advance directive had dis-
cussed it with their physician less than 40% of the time. And patients and families
routinely projected tnat the patient was more than 90% likely to survive for two
months or more when the patient actually had less than a "50-50" chance to live
so long.
If advance care planning is to improve, we probably have to develop ways to im-
prove communication. Recently, we convened thirty-five concerned persons with ex-
pertise in sociology, anthropology, medicine, nursing, law, ethics, and related fields
in order to settle on priorities for research in this field. This group felt strongly that
public policy urgently needs to be guided by reliable evidence as to the potential ef-
fectiveness of communication in creating shared decisions and in shaping those deci-
sions so that they reflect the patient's preferences and potential outcomes.
Certainly, advance directives have not delivered on their promises of a blossoming
of effective communication, a burgeoning of advance care planning for seriously ill
patients, or a curtailing of worthless and undesired life-prolonging care for dying
persons in hospitals. In nursing homes, the situation may be different. Certainly,
coincident with the PSDA, the rates of "do not resuscitate orders" in nursing homes
increased greatly, although states still evidence rates of DNR that vary from 10 to
70%, a probable indication of unjustified variation in practices.
Could advance directives and the PSDA still make a substantial difference? Per-
haps. We are still early in the story of responding to the PSDA and the other social
incentives to enhance the role of patient preferences and of advance care planning
in the shaping of care for dying and seriously ill persons. However, some evidence
gives us reason for caution. First, we have collected some 800 advance directives ac-
tually written in the care of seriously ill persons. Virtually all of them either name
the closest kin as surrogate or state a standard "living will" directive. Neither of
these endeavors can be expected to change the care plan substantially. The durable
powers of attorney often name the same proxies who would be used if there were
no document and the living will language is so vague as to have no real force with-
out interpretation. Furthermore, our experience with patients, families, and physi-
cians shows that many do not understand when and how advance directives should
be used, and usually rely upon them only when death is very near at hand. Finally,
very few interventions are actually being implemented for persons who are clearly
beyond being able to be helped. Only about one in every eight persons who die in
SUPPORT have an effort at resuscitation, and these patients have better or more
uncertain prognoses or prefer to have resuscitation tried. Just ten years ago, a clear
majority of patients would have had efforts to resuscitate. Very few persons with
very bad prognoses are kept on life-sustaining treatment. In sum, the rate at which
aggressive treatment is thrown at persons who cannot benefit is already greatly cur-
tailed, so one cannot expect a substantial effect of the PSDA in regard to savings.
Not only does PSDA have little effect, it also incurs substantial costs. The one ef-
fort to estimate the costs of hospitals' implementing the PSDA shows that minimal
compliance (having admissions clerks make inquiry and having the minimally re-
quired staff follow-up) will cost the "system" up to $100 million in the first year.
74
While this may seem to be a small amount, one would want to be more confident
than we can be now that the investment is yielding something of importance to pa-
tients, or substantial savings, especially before requiring this outlay every year. It
may be, for example, that the good to be had through the PSDA can be had by keep-
ing it in place for a limited time.
b. State Articulations of Relevant Law
The PSDA required each state to develop an authoritative statement of the law
of that state in regard to patients' rights to make decisions and to utilize advance
directives. Working with tne Commission on Legal Problems of the Elderly of the
American Bar Association and the consumer group Choice in Dying and with the
financial support of the Retirement Research Foundation, my research group helped
to develop and circulate a guidebook, hoping to raise all the issues and to provide
resources to these highly varying teams. We interviewed those involved in the proc-
ess of writing the interpretation of state law at mid-course and when the documents
were completed and we collected all the resulting documents.
In brier, this provision of the PSDA was stunningly effective. Virtually all states
developed very useful, consumer oriented materials under the guidance of unusual
multi-professional committees including governmental and private participants.
These coalitions have often been important in fomenting improvements in law af-
fecting medical decisionmaking generally. A majority of the states actually revised
their statutes to address some of the inadequacies that they identified in the exist-
ing laws. Also, most states provided fairly authoritative interpretations of ambigu-
ous provisions of state law which had the effect of enabling good decisionmaking.
c. Public and Professional Education
Health care providers and the states were required to provide education by the
PSDA. However, no financing or other federal support was provided and no enforce-
ment provisions were implemented. Some health care institutions and some private
groups have done substantial educational work nevertheless. The usual health care
provider has not made substantial contributions to this endeavor. Probably the most
effective educational intervention was the publicity over Richard Nixon's advance di-
rective, but much more could be done!
Although hard to quantify, one of the most important impacts of the PSDA has
been its serving as a stimulus for a national discussion among researchers, advocacy
groups, and the public regarding end of life decisonmakiing. In anticipation of the
PSDA, each of the major medical journals had articles about advance directives. The
PSDA has spurred a dialogue among multiple disciplines regarding decision making.
For example, the conference we hosted involved 35 experts from diverse back-
grounds and regions and was funded by the Greenwall Foundation, the Haas Fund,
the Kornfeld Foundation, and the Agency for Health Care Policy and Research. The
consensus research priorities will be important in shaping the future of funding
strategies, and this would not have occurred without the focus of the PSDA.
2. CARE OF DYING PERSONS
The usual person dying of illness in the United States faces an extraordinarily
high likelihood of dying in pain, alone and isolated, at great expense, and devoid
of meaningfulness, grace and dignity. Probably three-quarters of us will die in hos-
pitals with our dying having to be a hidden eventuality in a culture that only ac-
knowledges survival as a worthy goal.
There is a widespread myth that enormous resources are wasted on the dying.
The evidence for this is actually quite frail. About one quarter of the payments
under Medicare are directed at the care of those who die during that year. This
seems to be a reasonable proportion — after all, persons are commonly quite sick in
the year that they die. Much of the care needed near death is supportive and would
be part of any reasonably decent minimum standard of care. Scitovsky's study
showed that the ratio of medical services (like hospital care and physician visits)
to supportive services (like home care aides and nurses) declined very sharply with
age, so that the very old have much more expenses for nursing homes than for in-
tensive care, whereas the young (even below 70 years of age) have the reverse pat-
tern of expenditure. .Very few dying persons now have resuscitation efforts or ex-
tended stays in intensive care. However, there may still be important opportunities
for savings in care of the dying. Preliminary work by Wennberg and colleagues at
Dartmouth shows that excess capacity in hospitals has many troubling effects, in-
cluding increased use of hospitals for dying persons.
Modem medicine has completely lost even the basic descriptive knowledge about
dying that was accumulated at the beginning of this century. Indeed, the last se-
quential study of persons dying in hospitals was done in the first years of this cen-
75
tury! Textbooks of that era attended to describing the natural course of diseases
through to death. Modern texts often fail to note that most chronic illnesses eventu-
ate in death and they certainly do not instruct practitioners about how to care for
persons facing their deaths with each illness. The need for research and education
is pervasive.
We do not know how many of us will have pain, or unconsciousness, or disabil-
ities, or other adversity, nor for how long, nor how to address these problems. You
may find this hard to believe. People routinely think that doctors know how to prog-
nosticate, how to mitigate pain, and generally how to serve dying persons. Nothing
could be farther from the truth. This culture has been so thoroughly death -denying
that we have not even described our course to death nor developed professional
skills in service to the dying, except for the development of hospice services for cer-
tain cancer patients in recent years. It is probably true that we are gradually learn-
ing how to forgo inflicting unjustified technology upon dying persons, but we clearly
do not know how to see to it that most who die get excellent care, shaped to their
needs, and responsive to their symptoms.
The care system that we have developed has serious barriers to adequate care of
the dying. Reimbursement is not regularly available for services that merely miti-
gate suffering or support the daily needs of persons who are too weak or sick to care
for themselves. Even hospice is really available only to adults with solid cancers and
homes and substantial family wealth. The usual person dying and in need is an el-
derly woman with one or more chronic diseases, few resources, small families, no
regular physician, and fears of homelessness, hunger, pain, isolation, and lack of
control. All of these terrors can readily be mitigated, but doing so will require sub-
stantial reorientation of the care system so that continuity and support are prior-
ities. To this end, what is done in regard to the end of life must be integrated com-
pletely into the reforms now being considered for the care system overall.
3. NEXT STEPS
The PSDA has been an interesting first step, laying some groundwork and accom-
plishing much. However, more is yet to be done. Communication between patient
and physician and the availability of supportive services are the obvious short-
comings. There are no easy, painless, effective correctives for these problems. The
following list shows an array of options that I feel might offer possibiHties. Some
are quite substantial initiatives, others are inexpensive and time-limited. I offer
them in hopes that considering them will illuminate some productive avenues for
Federal action in a very difficult field.
a. Develop and require implementation of measures of quality of care affecting
dying persons, specifically:
— mandate that AHCPR and NIH (or regional health foundations) develop (or
fund the development of) measures to assess quality of care for dying persons
— mandate that regional health alliances (or their equivalent in whatever health
reform is enacted), or hospitals and other providers, assess quality of care for
the dying in each authorized health plan, using the measures developed above.
b. Require that the Secretary of HHS contract the following:
— with the lOM and/or appropriate professional groups to generate guidelines on
good palliative care
— with teaching institutions to generate curriculum and evaluation for various
kinds of students.
c. Make some Medicare Part A and graduate medical education funds under Medi-
care become contingent upon public and professional education for care of the dying.
d. Change Medicare reimbursement to require advance care planning in the man-
aged care package and to allow it to be billed in fee-for service Medicare.
e. Change physician experience toward long term care of seriously ill patients by
paying more for persistent care by the same practitioner than for acute care by a
8hifi;ing cast and by mandating training of generalists through regulating graduate
medical education payments under Medicare.
f Encourage innovations to develop Medicare benefits which would provide man-
aged care of the broadest scope, but limited hospital and emergency services.
g. Mandate each Institute in the NIH which has in its purview one or more sub-
stantial causes of death to report about the course to death for each major disease
and what can be done. When the knowledge base is too inadequate to support this
endeavor, expect the Institute to make the generation of that knowledge a high pri-
ority.
Communications
Statement of the American Bar Association
(by john h. pickering and charles p. sabatino)
Mr. Chairman and Members of the Committee: My name is John H. Pickering
and I am Special Advisor to the American Bar Association's Commission on Legal
Problems of the Elderly. From 1985 to 1993, I was Chair, of that Commission. I am
very pleased to submit these remarks regarding the success and impact of the 1990
Patient Self-Determination Act (PSDA). It has been almost four years since our
Commission's Assistant Staff Director, Charles P. Sabatino, appeared before this
same committee to address the then pending PSDA. Mr. Sabatino joins with me in
presenting these comments on behalf of the American Bar Association.
In 1990, the American Bar Association supported the passage of the PSDA, and
today we congratulate Senator John Danforth and Senator Daniel Patrick Moynihan
for their decisive and creative leadership in establishing this mechanism to inform
individuals of their rights to control end-of-life decisions. The PSDA has now been
in effect for two and one-half years. Because it is a law calculated to affect the pub-
lic consciousness and professional practice through ripples of information and dis-
cussion over time, rather than through dramatic splashes, it is difficult to point to
dramatic, cause-and-effect outcomes of the Act. However, it is possible to identify
significant positive changes in state law, medical practice, and education of the pub-
lic that have occurred over this period of time as a result of the PSDA. Even the
tenaciousness of the name "Patient Self-Determination Act" is indicative of the sig-
nificance attached to the legislation by the medical and legal communities. Enacted
as part of the Omnibus Budget Reconciliation Act of 1990, the provisions merely
amended the Medicare and Medicaid program. Yet in the vernacular, these provi-
sions have become permanently referred to as the Patient Self-Determination Act.
STATE DESCRIPTIONS OF THE LAW
One important example of positive change resulting directly from the PSDA has
come from the mandate that each state develop a written description of the law of
the state concerning advance directives to be distributed by providers or organiza-
tions under the requirements of the Act. In most states this prompted a remarkable,
broad-based and fruitful collaboration among state agencies, medical and health fa-
cility associations, bar associations, and consumer groups. By the effective date of
the PSDA (December 1, 1991), all states had prepared a written description, and
in all but three states these descriptions were written in non-technical language and
accessible to the general public. See Joan Teno, et al.. The Impact of the Patient
Self-Determination Act's Requirement that States Describe Law Concerning Patients'
Rights, 21(1) J. of Law, Medicine & Ethics 102 (1993).
A premier example of the kind of collaboration that resulted from the PSDA is
represented by the California Consortium on Patient Self-Determination. Comprised
of some 25 diverse groups, the Consortium produced not only a simple, readable
statement of one's rights to make decisions about medical treatment, but also multi-
lingual versions of the statement, plus a more detailed question-and-answer booklet,
model policies and procedures for health facilities, training materials for staffs and
the community, and PSDA handbooks for facilities.
The ABA's Commission on Legal Problems of the Elderly actively supported state
level efforts to develop high quality descriptions of patients' medical decisionmaking
rights through publication of the Patient Self-Determination Act State Law Guide in
1991. The Guide was provided to all the state working groups responsible for devel-
oping descriptions of law. Through the distribution system of the American Associa-
tion of Retired Persons, the ABA Commission has also made available free to the
(76)
77
public a booklet entitled Health Care Powers of Attorney. The booklet includes a
sample form that can be detached and used by readers of the booklet.
FACILITY PRACTICES
Facility practices illustrate another important area of change affected by the
PSDA. The August 1993 report of the Inspector General, Department of Health and
Human Services, found that most facilities are indeed complying with the mandates
of the PSDA to: (1) develop and provide written materials regarding health care de-
cisionmaking and provide them to patients upon admission, (2) develop written poli-
cies and procedures regarding advance directives, (3) provide staff education, and
(4) provide community education on the subject. While 1 percent compliance must
remain the ultimate criteria for success, it is nevertheless gratifying to see the sub-
stantial strides providers have made in fulfilling the informational and educational
goals of the Act.
STATE LAW
The same report also reinforces the findings of other studies, showing that while
a large majority of individuals have at least a rudimentary understanding of ad-
vance directives, only about one out of five have written advance directives. We be-
lieve that one of the disincentives of executing advance directives has been the com-
plexity of state law on the topic. Most states have enacted two or more statutes re-
lating to advance directives and surrogate health-care decisionmaking. The legisla-
tion has evolved incrementally in fits and starts, resulting in often fragmented, in-
complete, and sometimes inconsistent sets of rules even within a single state. In
tracking state health decisions law since prior to the PSDA, the ABA Commission
has seen encouraging signs of movement among the states during the last four years
toward more comprehensive, yet simpler, rules and procedures governing advance
directives and medical decisionmaking for persons lacking capacity. One simple but
telling hallmark of this trend is the widespread use of the generic term "Advance
Directive," formally coined by the PSDA. The term has been important in breaking
the narrow "living will" mold of thinking and encouraging the public and providers
to think about more comprehensive documents containing both proxy appointments
and instructions. The term has become virtually omnipresent in legislation and edu-
cational materials since 1991. For further information on state legislative trends, we
refer you to the summary of relevant state legislative trends, attached to this testi-
mony as Appendix A.
The recent adoption of the new Uniform Health-Care Decisions Act by the Na-
tional Conference of Commissioners on Uniform State Laws in August of 1993 will
further encourage the trend toward more comprehensive yet simpler legislation in
this area. In February of this year, the American Bar Association added its endorse-
ment to this model act.
RECOMMENDATIONS FOR ACTION
On the federal level, an auspicious opportunity exists within the context of na-
tional health care reform to advance the original goals of the PSDA to ensure that
Americans are informed and educated about their health-care decisionmaking
rights, especially with respect to the use of advance medical directives. The ABA
suggests that the Congress consider five elements:
First, we assume that the basic PSDA requirements will be made applicable to
all health plans under any health reform bill. However, in addition to the basic re-
quirements, the statute should also mandate health plans to offer, as part of their
services, periodic opportunities for patients to discuss end-of-life medical choices and
preferences with appropriate clinicians. This requirement goes a step further than
the current mandate that requires the provision of information to individuals at the
time of enrollment. Advance directives work best when they enhance direct commu-
nication between patients and health care providers, not when they substitute for
face-to-face communication. A better focusing of the PSDA on counseling outside the
stressful context of admission will substantially promote the underlying goal of the
Act.
Second, the federal government, through its medical education and research fund-
ing programs, should explore ways to promote the inclusion of advance directive
counseling in medical school curricula, certification programs, and physician prac-
tice standards. Physicians who regularly deal with dying patients do not routinely
receive training in end-of-life counseling to enable them to initiate and facilitate
meaningful discussions with patients and their families about options available to
them.
78
Third, the Congress should provide adequate funding to enable the Secretary of
Health and Human Services to carry out effectively the mandate under the PSDA
to implement a national campaign to inform the public about advance directives and
the patient's right to participate in and direct health care decisions.
Fourth, assuming that some form of health security identification card is included
in final health reform legislation, Congress should require that these cards contain
a place to note the existence of the individual's advance directive. Alternatively,
Congress, through its highway funding programs, could encourage states to provide
such a place on all drivers' licenses. Three states, Illinois, South Dakota, and Texas
have already taken steps in this direction. The goal is to create a universal, acces-
sible notice that travels with the individual.
Fifi;h, Congress should ensure that advance directives will be portable — that is,
they will be recognized across state lines. Because of the variability of state legisla-
tion, individuals frequently express concern about whether their advance directives,
executed in one state, will be respected in other states. In a mobile society such as
the United States, this is an especially important concern. As to actual practice, we
know of no empirical evidence indicating whether or not resistance to out-of-state
advance directives is truly widespread. Nevertheless, the concern about it is wide-
spread. We have reviewed the relevant language of state advance laws and found
that, in most states, the. language is less than adequate for ensuring the effective-
ness of out-of-state directives. Because this is an issue arising from interstate travel,
the federal government is uniquely situated to deal with it nationally. The ABA
Commission has suggested ways to address portability at the federal level, and we
remain available to refine possible solutions.
In closing, we think that it is clear that the PSDA has made a vital contribution
to enhancing the knowledge, participation, and control of individuals over end-of-life
health-care decisions. The ABA remains committed to these underlying goals of the
PSDA and will continue to be available to work with the Senators and staff of this
committee to achieve this objective.
Appendix A
LEGISLATIVE TRENDS IN HEALTH CARE DECISIONMAKING
A. Four Forces Have Fueled the State Legislative Process on the Subject of Health-
Care Decisionmaking.
1. Medical providers prefer-legal safe harbors. Influenced by a technological,
cultural, and professional imperatives to keep patients alive, the medical profes-
sion is more willing to change course if lawmakers provide clearly defined ave-
nues or bright pathways. (Irony: most advance directive statutes are fiUed with
ambiguities.)
2. The consumer movement in health care continues to champion patient au-
tonomy and choice.
3. The 1990 Nancy Cruzan case, decided by the U.S. Supreme Court, contin-
ues to exert a profound influence. Even though dicta, the portions of the Court's
opinion indicating acceptance of a constitutional basis for the right to refuse
treatment has led states to assume it is so. State legislative developments have
shown greater deference to patients' rights.
4. The Patient Self-Determination Act, especially through its requirement for
State descriptions of law, has forced states to examine state law and respond
to gaps and ambiguities.
B. Trends in Health Decisions Legislation Relevant to the PSDA:
1. Every state has one or more Advance Directive (AD) statutes.
a. All states except three (Massachusetts, Michigan, and New York) have
statutes providing for living wills. The three that do not have specific leiving
will statutes do recognize living will tjTJe instructions under their health care
proxy statutes.
b. All states except Alabama have some form of health proxy statute. Most
address all health care decisions, although some address only terminal condi-
tions.
c. State Advance Directive legislation has developed in waves.
Living Will legislation spread dramatically between 1976 and mid 80's.
Health Care Power of Attorney (HCPA) or proxy directive legislation has
surged mostly 1989-92.
79
We are now seeing two more waves of materially new legislation: combined
or comprehensive acts, and emergency medical services DNR acts, both de-
scribed below.
2. Combined I Comprehensive Acts Are Replacing Current Statutes.
States are beginning to reassess the piecemeal legislation they have crafted and
rewrite it into unified comprehensive statutes — covering Advance Directives,
even anatomical gifts, surrogate consent, and emergency medical services.
Aim of Combined or Comprehensive Acts: To recognize a single combined Ad-
vance Directive and move away from treating these as separate legal instru-
ments.
NJ was the first to do in '91, starting with a clean legislative slate.
In 1992, VA, FL, and AZ rewrote their statutes to merge Living Wills and
HCPAs into a single AD tool. In 1993, MD enacted a comprehensive new
act, and CT created comprehensive form but kept 3 separate and somewhat
conflicting acts.
In August 1993, the National Conference of Commissioners on Uniform
State Law adopted a comprehensive model act entitled the Uniform Health-
Care Decisions Act. The American Bar Association endorsed this Act in
February 1994.
3. States are taking steps to ensure that terminally ill persons in the community
are not resuscitated against their wishes by Emergency Medical Services. (EMS-
DNR statutes)
These provisions address Non-Hospital Do Not Resuscitate Orders in the con-
text of emergency medical services (EMS).
a. Background: In the home or community, EMS personnel are generally
required to institute cardio-pulmonary resuscitation and other life-saving
treatment unless a doctor physically present instructs them not to do so.
Without legislation to permit them to comply with Advance Directives re-
questing no resuscitation, EMS personnel have generally not followed Ad-
vance Directives.
b. Starting in 1991 with the enactment of non-hospital DNR laws in IL
and NY, 17 states now have such provisions as of January 1994. Some of
these statutes, like NY's and AZ's, provide very detailed identification re-
quirements, procedures and protocols. Others, like VA's, simply authorize
the health department to develop a process.
The key issues in drafting protocols has been: Key issues:
Under what conditions or circumstances will refusals of treatment be
recognized by EMS? Most protocols require that the individual be cer-
tified as terminally ill.
How can individuals who have valid non-hospital DNR orders be
identified swiftly and accurately by EMS personnel? States are experi-
menting with special identification bracelets, color coded forms, and
computer identification systems.
4. States are Increasingly addressing "Family Consent" or "Surrogate Consent"
in the Absence of Advance Directives.
a. Family consent statutes have evolved via four different pathways:
(1) Informed consent laws that emerged in many states in the 1960's and
70's provided for family consent to treatment as a way to facilitate access
to care. They are usually silent on the issue of refusals of treatment.
(2) Some Living Will statutes included family consent authority, but
these statutes are typically limited to patients in terminal conditions where
decisions about life-sustaining treatment are being considered.
(3) New York's family consent provision deals only with do-not-resuscitate
orders under the New York DNR statute. This decision-specific approach is
unusual.
(4) The growing current trend is to include family/surrogate consent with-
in comprehensive state health-decisions statutes, like those described
above.
b. About 30 states have some form of family consent statute (VA, FL, and AZ
were among first to realistically merge them into comprehensive acts).
c. All these statutes create a list of permissible surrogates in order of priority.
Only recently have these laws begun to address non-conventional family situa-
tions, or the total absence of available family.
80
AZ, FL, IL, CO, and MD include "close friend" in list of permissible surro-
gates.
AZ also includes "patient's domestic partner" if the patient is unmarried.
However, AZ drastically limits the authority of any surrogate not actually
appointed by the patient or a court. These surrogates cannot make deci-
sions about nutrition and hydration,
d. States have not addressed what to do if no surrogates on the list of per-
mitted family or friends are available. A few states have taken tentative steps
toward prescribing non-judicial means for making decisions for these persons.
5. States Are Just Beginning to Show an Interest in Strategies to Increase Acces-
sibility and Notice.
Only three states have considered using driver's licenses as a means of encour-
aging the use of Advance Directives and to make them easily available to pro-
viders. Also, considering idea of central repository.
11^1991 III. Legis. Serv. P.A. 87-590 (H.B. 1446) (West) (amending Ch. 95
1/2, par. 6-110) (enacted September 18, 1991, effective January 1, 1992);
ISD— 1992 S.D. Laws S.B. 207, approved March 10, 1992.
ITx— 1993 Tex. Gen. Laws ch. 190 (HB 502), enacted 5/19/93, eff. 9/^93,
provides that the Department of Public Safety shall print on the reverse
side of each driver's license "Directive to physician has been filed at tel. #"
followed by a line that the holder of the license may use to indicate the ap-
propriate telephone number.
ND is considering the idea of creating a central repository of Advance Direc-
tlVGS*
ND— Sen. Cone. Res. 4013, adopted March 15, 1993, directs the state's Leg-
islative Council to "study the feasibility of establishing a central repository
for living wills, documents evidencing anatomical gifts, durable powers of
attorney for health care, and other similar documents." The Legislative
Council is to report its findings and recommendations to the 1994 legisla-
tive assembly.
A few States have information and disclosure provisions roughly parallel to the
PSDA. These provisions are usually incorporated into the AD statute.
6. States Have Not Been Clear About the Applicability of Advance Directives to
Mental Health Treatment.
Many Advance Directive statutes apply to treatments for any physical or men-
tal condition. However, the interaction of Advance Directive laws with mental
health treatment and commitment laws is often uncertain. Minnesota and Or-
egon have enacted special Advance Directive provisions for mental health treat-
ment.
The Minnesota Commitment Act (M.$. §253B.03) authorizes an Advance
Directive which applies only to intrusive mental health treatments, defined
as "electroshock therapy and neuroleptic medication." The Advance Direc-
tive may include preierences, instructions, and/or the appointment of a
proxy.
The Oregon Declaration for Mental Health Treatment (1993 Or. Laws ch.
442) permits instructions and/or designate an attorney-in-fact for mental
health treatment. "Mental health treatment" is defined as: "convulsive
treatment, treatment of mental illness with psychoactive medication, and
admission to and retention in a health care facility for a period not to ex-
ceed 17 days for care or treatment of mental illness." Provisions are in-
cluded for overriding the principal's wishes in limited circumstances.
C. Key Public Policy Issues
1. What is the goal of Advance Directive legislation? Simply getting everyone
to "have" an Advance Directive is merely a triumph of form over substance. The
more difficult goal is getting everyone to "use" an Advance Directive in a way
that enhances involvement in health care decisionmaking. Advance Directives
cannot be a replacement for good communication. They are best used as tools
to stimulate and ensure good communication.
2. Legislative Fragmentation. Most states have two or more pieces of legisla-
tion addressing different aspects of health-care decisionmaking on behalf of per-
sons unable to speak for themselves. Inconsistencies and gaps are common.
3. The impact of statutory "protections" (e.g., required formalities), restrictions
(e.g., limitations on decisionmaking authority of proxies), and preconditions
81
(e.g., certification of terminal illness or permanent unconsciousness by two phy-
sicians) is unclear. Do they protect vulnerable persons or merely discourage the
use of Advance Directives?
4. The Impact of Forms and Formalities. Mandatory forms limit flexibility and
choice. Optional forms may do so indirectly. Complicated witnessing rules may
discourage the completion of Advance Directives.
Consider the tyranny of formalities: the story of James Robert Rhea's
death, by reporter Denise Gamino in the Austin-American Statesman, May
15, 1992.
Formalities may adversely affect the portability of Advance Directives.
5. Portability of Advance Directive Across State Lines. Portability involves
three issues.
a. Is the document validly executed?
b. Will the specific wishes or instructions in the Advance Directive be re-
spected in the site state if the instructions are valid in state of origin but
not in site state.
c. Which state's presumptions and interpretation rules of Advance Direc-
tives applies when they differ?
6. Emergency Medical Services Do-Not-Resuscitate Directives. Who should be
eligible, and how can they be swiftly and accurately identified by EMS person-
nel?
7. Oral directives. What is the legal status of oral instructions given by the
individual to his or her physician? Should the law impose witnessing and docu-
mentation requirements on oral instructions?
8. Patients without Surrogates. How should decisions be made where there is
no close family, friend, or other surrogate with a close relationship to the
decisionally incapacitated patient?
CHRONOLOGY OF ADVANCE DIRECTIVE STATUTES
(As of January 1994)
LivinK Will Statutes:
76- CA 1
77- AR, ID, NV, NC, NM, OR, TX 7
78- ...
79- KS, WA 2
•80- .
'81-AL, DC 2
'82- DE, VT 2
■83- IL, VA 2
'84- FL, GA, LA, MS, WV, Wl, WY 7
'85- AZ, CO, CT, IN, lA, ME, MD, MO, MT, NH, OK, TN, UT 13
■86- AK, HI, SC 3
'87- ...
■88- . .
'89- MN, NO, OH 3
'90- KY 1
'91- NJ, SD 2
'92- NE, PA, Rl 3
'93- ...
TOTAL: 48
Health Care Power of Attorney Statutes:.
'83- CA 1
'84- .
'8S- ME, UT 2
•86- Rl 1
'87- IL, NV 2
•88- AK, ID, VT 3
'89- DC, KS, NM, OH, OR, TX, VA, WA 8
•90- CT, FL, GA, KY, LA, MA, Ml, MS, NY, SD, TN, WV, Wl 13
'91- IN, lA, MO, NH, NJ, NC, ND, WY 8
'92- AZ, CO, HI, NE, OK, SC 6
'93- MD, MN 2
TOTAL: 46
82
Combined/Comprehensive AOs:.
•91- NJ
'92- AZ, FL, OK, VA
■93- MD, (CD
TOTAL:
EMS/DNR Statutes:
'91- IL. NY
'92- AZ, CO. FL, PA, Rl, VA, WA
•93- AR, MD, MT, NM, TN, UT, WV. WY
TOTAL:
17
Communications and the Patient Self-Determination Act
Strategies for Meeting the Educational Mandate
Findings of a Working Group
THE ANNENBERG
\^ASHCNGTON PROGRAM
Communications Policy Studies
Sorthwestem University
November 9-10, 1992
Washington, D.C.
Sponsored by
AACN
AMERICAN ASSOCIATION
OF CRITICAL CARE NURSES
The Patient Self-Determination Act (PSDA) took effect in December 1991 with the
goal of ensuring that each individual's right to self-determination in health care decisions
be communicated and protected. The Act has three significant provisions.
First, it requires hospitals, skilled nursing facilities, home health agencies, hospice
programs, and HMOs which participate in Medicare and Medicaid programs to distribute
to every adult patient information describing his or her rights under State law to make
decisions concerning medical care, including the right to accept or refuse medical or
surgical treatment and the right to formulate advance directives (e.g. , a written document
such as a living will or durable power of attorney). Health care providers must also
document in each patient's record whether or not he or she has executed an advance
directive and must provide staff and community education concerning advance directives.
The second principal provision of the Act requires that states develop a written
description of their laws concerning advance directives for distribution by health care
providers. Third, the Act requires the Secretary of Health and Human Services to
implement a national campaign to inform the public and medical professionals of each
person's right to make decisions concerning medical care, including the right to accept or
refuse medical or surgical treatment, and the existence of advance directives.
Strategies for Meeting the Educational Mandate
On November 9-10, 1992, The Annenberg Washington Program in Communica-
tions Policy Studies of Northwestern University and the American Association of Critical-
Care Nurses convened a high-level working group of individuals representing nurses,
physicians, ethicists, communications experts, social workers, patients, lawyers,
sociologists, and researchers to accomplish three objectives:
83
1. Examine the principles of public information, communication, and
education as they apply to the PSDA;
2. Examine existing educational models developed to implement the
PSDA; and
3. Define educational and communication strategies to facilitate
nationwide implementation of the Act.
The working group was moderated by Barbara A. Gill, R.N., M.N., a clinical nurse
specialist and a Fellow of The Annenberg Washington Program.
This statement reflects the key issues identified by the working group. It does not
necessarily reflect the views of the sponsoring organizations, individual participants, or the
organizations represented. A companion volume containing the papers presented at the
forum will be available from The Annenberg Washington Program. An earlier white
paper, The Patient Self-Determination Act: Implementation Issues and Opportunities, is
currently available from The Annenberg Washington Program.
Working Group Recommenjdations
The Working Group Recommends:
1. Health care providers move beyond legal mandates and mere compliance with
the letter of the law to treat consideration of advance directives as a process,
not a single moment in time (e.g. , the receipt of written material or the signing
of a document).
To optimally respond, providers should plan educational initiatives for a variety of
times and settings. There is a need to move away from the clinical setting, to introduce
end-of-life decisions in less threatening environments, and to reach the many people who
have no regular contact with health care institutions. Educational initiatives should
embrace community participation.
2. Health care providers approach advance directives from the patient or
decision-maker's point of view, rather than that of a particular profession or
professional.
The complexity of self-determination requires the participation of the broadest
possible array of providers as well as interdisciplinary cooperation and collaboration.
Individuals must have access to the provider they are most comfortable with, whether
lawyer, nurse, physician, or other professional. The information provided must be
accurate, relevant, and understandable.
84
3. Health care providers create systems for raising the issue of end-of-life
decision-making that are sufficiently flexible and broad-based to take into
account patients' different sensitivities and needs.
Clarifying individual values, treatment decisions, and identifying the reasons for
these decisions are essential ways to bring forth the intent of the law. The language used
in the self-determination process, for example, must be understandable in order to promote
effective dialogue among providers, health care recipients, and their significant others.
4. Health care providers consider the interaction between patient autonomy and
other values in health care delivery.
While both autonomy and patient involvement are extremely important in health
care delivery, other values must be explicitly acknowledged. For example, only medically
appropriate treatment options should be offered or delivered to a patient. Advance
directives should not be used to subjugate the professional judgment of nurses, physicians,
and other health care professionals to the wishes of patients.
5. Quantitative and qualitative studies are needed to analyze the relationship
between motivation to establish advance directives and such factors as age,
gender, culture, dennitions of family, and individual values.
It is not clear what motivates individuals to establish advance directives. Nor is
it clear what motivates professionals to participate in the self-determination process.
6. Economic issues must be addressed when educational programming for the
PSDA is planned.
Issues to be considered include cost containment by institutions, reimbursement for
professional time, and financial expenses of patients and families.
7. Professional standards for participating in the education and implementation
of the PSDA must be established.
The ongoing monitoring of the PSDA process should utilize a continuous quality
improvement model.
8. A comprehensive, ongoing informational and educational program is necessary
to provide the background and support for widespread public and professional
participation in the PSDA process.
85
Speakers at the Forum
Fred H. Gate, J.D., Director of Research and Projects and Senior Fellow, The
Annenberg Washington Program
Marianne Chulay, R.N., DNSc, FCCM, President, American Association of Critical-
Care Nurses
Susan H. Evans, Ph.D., Research Scientist, The Annenberg School for Communication,
University of Southern California
Barbara A. Gill, R.N., M.N., Fellow, The Annenberg Washington Program and
clinical nurse specialist
Joan Killion, M.P.A., Director, The Community Advance Directives Project, Midwest
Bioethics Center
John La Puma, M.D., Director, Center for Clinical Ethics, Lutheran General Hospital
The Honorable Sander M. Levin, J.D. (D-MI), Member of the House Ways and
Means Committee as well as the Health and Human Resources Subcommittees
Sarah J. Sanford, R.N., M.N., CNAA, FAAN, Chief Executive Officer, American
Association of Critical-Care Nurses
Michael S. Victoroff, M.D., Chair, Department of Family Medicine, Aurora
Presbyterian Hospital
The American Association of Critical-Care Nurses is the world's largest specialty
nursing organization with almost 80,000 members and 270 chapters worldwide. It is
dedicated to the implementation of a patient driven health care system where critical-
care nurses make their optimal contribution. With its wide ranging and well known
education programs and its ever-increasing ability to provide scholarships and research
grants, the association has directed all of its efforts to the realization of this vision.
The Annenberg Washington Program in Communications Policy Studies of
Northwestern University provides a neutral forum, open to diverse opinion, for
assessingthe impact of conmiunications technologies and public policies. The Program
serves as a bridge between policymakers, industry officials, academics, the press and
the public.
The Annenberg Washington Program
The Willard Office Building
1455 Pennsylvania Avenue, N.W., Suite 200
Washington, D.C. 20004
Telephone: (202) 393-7100
Fax: (202)638-2745
86
David M. English,
University of South Dakota, School of Law, May 3, 1994.
Senator John C. Danforth
U.S. Senate,
Washington, DC
Re: Hearing on PSDA
Dear Senator Danforth: This letter and the enclosed article is submitted for the
record for the May 5 hearing on the Patient Self-Determination Act.
While the PSDA is a federal statute, it seeks to effectuate rights under advance
directives, which are creatures of state law. The recently approved Uniform Health-
Care Decisions Act, if enacted by the states, will dramatically change the state law
on advance directives. This new act was approved by the Uniform Law Commis-
sioners last August, and by the American Bar Association this February. It has also
been endorsed by AARP. I served as the Reporter for the Act and was responsible
for much of the drafting. Like the PSDA, the primary purpose of this new Uniform
Act is to facilitate the making of advance directives.
The following are some highlights of the Act:
— The Act is comprehensive and addresses topics now usually dealt with by sepa-
rate statue.
Unlike the statutes in most states, the Health-Care Decisions Act covers the
subject of advance directives in one place, avoiding a piecemeal approach.
— The Act does not attempt to legislate restrictions on the withholding of life-sus-
taining treatment.
While the questions of when life-sustaining treatment may be withdrawn is an
issue for serious consideration, attempts by the states to legislate in this area
have failed. The complex definitions of the categories of patients for whom life-
sustaining treatment may be withheld or, withdrawn have turned many state
statutes into virtual nullities. The Health-Care Decisions Act does not attempt
to repeat this failure. It instead leaves the question of withdrawal of life-sus-
taining treatment where it belongs — with the patient, family, physicians, and
the standards of medical ethics.
— The Act keeps execution requirements to an absolute minimum.
The execution requirements for an advance directive in most states are both
cumbersome and confusing, requirements that deter the use of this important
device. Under the Health-Care Decisions Act, these requirements are largely
eliminated. A power of attorney for health care need only be signed. A patients
instruction as to future care may be either written or oral.
The Act contains many other provisions other than those summarized above. For
a fuller treatment, enclosed is an article I have written, "The Health-Care Decisions
Act Represents A Major Advance" which appeared in the May issue of Trusts & Es-
tates.
I hope this letter and the enclosed are of assistance for your upcoming hearing.
87
The Uniform Laws
The Health-Care Decisions Act
Represents A Major Advance
While prospects for a quick and widespread enactment are uncertain,
it will likely prove an influential model for many years to come
By DAVID M. ENGUSH
University of South Dakota
Vermillion. SD
Planning for health-care deci-
sion-making has become a sig-
nificant component of the es-
tate planning practice in recent
years This increased attention has
been fueled by a variety of factors,
with changing demographics perhaps
being the most important. The num-
ber of induTduals over age 65 is in-
creasing each year, and the number
over age 85 is increasing at an even
more rapid rate. But America's pop-
ulation is not aging well. People are
living longer but more often in a con-
dition of chronic disability.
Some well-publicized cases also
have focused attention on the issue.
The widespread interest in living
Wills may be traced to the seminal
case of In re QuinlanJ and an in-
creased interest in advance direc-
tives generally was fueled by the
Supreme Court's ruling in Cruzan.^
This increase m public mterest has
led to a flurry of state legislation.
Quinlan spurred the widespread en-
actment of living WU] statutes, with
all but three states now having such
legislation on the books.3 Cruzan led
to a rapid increase in the number of
power of attorney for health care
statutes, a device now authonzed in
all but two states.'' Furthermore,
more than 30 states have enacted
statutes allowing family members
and, in some instances, close friends
to make health-care decisions for in-
• di\iduals who lack capacity. 5
The state legislation has been a
mixed blessing, however. Many of
the health-care statutes, while en-
acted for the purpose of facilitating
the making of advance directives,
may actually inhibit their use. The
execution requirements are often
formidable. Restrictions on the type?
of treatment, which may be withheld
or withdrawn, are common. There is
little uniformity. The result is a sys-
tem of legislation that is fi-agmented.
incomplete, and often inconsistent,
both among states and even within
states.
The Uniform Health-Care Deci-
sions Act. if enacted by the states,
would bring order to the present
chaos. The primary purpose of the
Act. which was approved by the Uni-
form Law Commissioners in August.
1993. and by the ABA House of Del-
egates in February, 1994. is to facil-
itate the making of advance direc-
tives. The Act is comprehensive,
addresses decisionmaking for those
who fail to plan, and eliminates
many of the restrictions. It is an Act
that is congenial to estate planners,
many of whom played a major role
m Its drafting.^ Comprehensive ar-
ticles on the Act will appear else-
where.'^ The purpose of this article
IS to describe the Act's innovative
features as compared to the existing
state legislation.
The Act IS comprehensive and ad-
dresses topics now usually dealt with
by separate statute. While most
slates have legislation recognizing
living Wills, powers of attorney for
health care, and a decisionmaking
role for the family, the states have
usually addressed these topics by
separate statute, often in piecemeal
fashion. A new approach is begin-
ning to emerge, however. Instead of
enacting separate living Will and
power of attorney for health care
statutes, states are beginning to
move toward a combined approach.
The 1991 New Jersey statute, for ex-
ample, governs the creation of both
living Wills (referred to as "instruc-
tion directives") and powers of at-
torney for health care i referred to as
"proxy directives").* The more re-
cently enacted acts in Arizona. Flori-
da. Maryland and Virginia cover in
one place not only living Wills and
powers of attorney for health care
but fjimily decisionmaking as well."
The Uniform Health-Care Deci-
sions Act builds on this trend. Un-
der the Act. any adult or emanci-
pated minor may give an "advance
health-care directive." which refers to
TOl tCTC t CCT^TCC
88
either a "power of attorney for health
care" or an "individual instruction.""'
Like the New Jersey statute, the
Uniform Act deliberately avoids the
term "living Will." the drafters con-
cluding that "individual instruction"
IS more accurate and less confusing.
Should an individual fail to exe-
cute a power of attorney for health
care or should the agent not be avail-
able, the Uniform Act authorizes
health-care decisions to be made by
a "surrogate." to be selected from a
pnonty list."
The Act. while comprehensive, does
not address alt conceivable issues. In
recent years, many states have be-
gun to address the thorny issue of
whether and under what circum-
stances emergency medical services
personnel may recognize do-not-re-
suscitale orders. The Uniform Act
includes do-not-resuscitate orders
within the definition of "health-care
decision."'^ and. by extension, au-
thorizes an indmdual. or his or her
agent or surrogate, to give such an
order However, detailed protocols
and protections are needed to guide
and protect EMS personnel in with-
holding resuscitation. Given that
stale legislattires have only begun
to tackle this issue, the drafters con-
cluded that It would now be prema-
ture to attempt to codify protocols or
guidelines in model legislation.'^
The Act also does not address
health-care decisionmaking for un-
emancipated minors. To have cov-
ered the full range of healthcare de-
cisions for unemancipated minors,
including the effect of differing
parental and custodial arrangements
and levels of maturity, would have
made the Act unwieldy. However,
the drafting committee did recom-
mend that the Commissioners con-
sider developing a separate uniform
act on this topic.
The Act does not attempt to legis-
late restrictions on the withholding
or withdrawal of life-sustaining treat
mcnt A majontv of the existing pow-
er of attorney for health care statutes
permit a pnncipal to delegate to an
agent the authority to make all
health-care decisions. Although held
lo a standard of care, the agent may
act for the principal regardless of the
nature of the principal's condition or
the type of treatment in question '^
The living Will statutes are an-
other matter. The complex defini-
tion.'; of the categories of patients for
whom life-sustaining treatment may
be withheld or withdrawn, and the
prohibitions against the withdraw-
ing or withholding of certain forms
of treatment, have rendered many
of these statutes into virtual nulli-
ties. Prompted by Cruran. a number
of living Will statutes have recently
been hberalized. Withdrawal or with-
holding of treatment is permitted not
only from patients in a "terminal
condition." but also from patients in
conditions of "permanent uncon-
sciousness."'^ But while many of the
living Will statutes are now less re-
stnctive, a major effect of the recent
amendments is to add yet another
layer of definitions requiring inter-
pretation.
The drafters of the Uniform Act
concluded that the attempts to statu-
torily prescribe the circumstances
when life-sustaining treatment may
be withheld or withdrawn unduly re-
stnct. are difficult to apply in a chn-
ical setting, and provide an appear-
ance of precision where none is
possible. Under the Act. there are no
restrictions. An individual instruc-
tion and the authonty which may be
granted to an agent may extend to
all "health-care decisions." a term
which is expansively defined to in-
clude such matters as approval or
disapproval of orders not to resusci-
tate, and directions to provide, with-
hold, or withdraw artificial nutntion
and hydration and other forms of
health care.""
While no restrictions are pre-
scribed, certain pnnciples of law and
medical practice will impose limits,
although indirectly. The Act autho-
nzes the provision, withholding, or
withdrawal of health care only to the
extent not prohibited by other
statutes of the stale.'" Furthermore,
a health-care provider or institution
may decline to comply with an indi-
vidual instruction or health-care de-
cision that requires medically inef-
fective health care or health care
contrary to generally accepted
health-care standards. '* Finally,
agents and surrogates are subject to
a standard of care. An agent or sur-
rogate may not act contrary to the
principal's or patient's express wish-
es, and must otherwise act in the
principal's or patient's best inter-
est. 's
The Act minimizes execution re-
quirements. The execution require-
ments for an advance directive in
most states are both cumbersome
and confusing. A substantial major-
ity of the living Will statutes require
two witnesses, but Minnesota and
New Jersey permit either witness-
ing or acknowledgment, and South
Carolina requires both witnessing
and acknowledgment. 20 There is
greater variation among the power
of attorney for health care statutes.
Some statutes require only the prin-
cipal's signature.''' Other statutes
follow the living Will model by re-
quiring two witnesses. 22 Finally,
some statutes require that the pow-
er be either witnessed or acknowl-
edged at the prmapal's option, others
that it be both witnessed and ac-
knowledged. 23
A majority of the living Will and
power of attorney for health care
statutes also impose witness quali-
fication rules. Some of these lists are
quite lengthy. Included on. the hsts of
various states are relatives, in-laws,
intestate heirs. Will beneficiaries,
creditors, the designated agent,
health care providers, and nursing
home operators and employees. Un-
der some statutes, the advance di-
rective IS invalid if either witness is
from one of the proscnbed classes
But under other statutes, a prohib-
ited person may act as long as the
other witness is independent. ^-i
The drafters of the Uniform Act
concluded that the cumbersome ex-
ecution requirements found under
many state statutes have done little
to deter fraud or prevent overreach-
ing. Rather, their primary effect is
to deter the making of advance di-
rectives and to invalidate defective-
ly executed directives that otherwise
would be reliable indicators of the
individual's intent. Consequently, to
facilitate the making of advance di-
rectives, the Act keeps execution re-
quirements to an absolute minimum.
A power of attorney for health care
must be written and signed, but need
not be witnessed or acknowledged. 25
An individu2d mstruction may be ei-
ther written or oral. 26
The statutory recognition of an
oral instruction, while relatively rare.
IS found in both the 1992 Virginia
and 1993 Maryland acts. 2' Oral in-
structions are frequent in clinical
practice. Furthermore, case law. the
Uniform Act itself, and the statutes
in many states require agents and
surrogates to honor the prmapal's
and patient's express wishes, which
may include oral instructions. It
seems nonsensical to require an
agent or surrogate to honor an oral
TRUSTS 4 ESTATES / MAY 1 ''J
3S
89
instruction while at the same time
denying statutory recognition to an
oral instruction given directly to a
health-care provider.
The 1993 Maryland act goes even
further by authorizing an individual
to orally designate an agent. ^*' The
Uniform Act does not go quite this
far. But as descnbed below, the act
does allow an individual to orally
designate a surrogate.'^*
The Act contains one combined
form. The use of statutory forms pro-
vide a number of benefits. First, be-
cause the form is standard and wide-
ly available, individuals who might
not otherwise seek professional help
may be more inclined to execute an
advance directive. Second, the avail-
ability of an officially sanctioned
form will reduce the reluctance of
health-care providers to honor a di-
rective Furthermore, through con-
tinued use providers will hopefully
become more familiar with the form's
provisions and make more informed
decisions.
Nearly all living Will statutes in-
clude statutory forms. ^o as do a
growing number of power of attor-
ney for health care statutes.^' The
enactment by most states of sepa-
rate living Will and power of attor-
ney for health care statutes has. per-
haps not surpnsmgly. resulted m the
enactment of separate statutory
forms. Recently, however, states
have begun to enact a combined
form, one that allows an individual
to both designate an agent and give
instructions. The 1993 Connecticut
and Oregon acts are notable exam-
ples.-*-
The Uniform Act. like Connecti-
cut and Oregon, includes a combmed
form '^ Unlike Oregon.-*'' however,
use of the form is entirely optional.
An individual is also free to omit or
modify any part of the form. Making
the form optional is consistent with
the principle of patient autonomy,
one of the dnving forces behind the
Act It IS also of particular impor-
tance to adherents of certain reli-
gions, such as Christian Science,
whose special views would not oth-
erwise be accommodated.
The power of attorney appears
first on the form to ensure to the ex-
tent possible that it will come to the
attention of a casual reader. This re-
flects the reality that the appoint-
ment of an agent is a more compre-
hensive approach to the making of
health-care decisions than is the giv-
ing of an individual instruction,
which cannot possibly anticipate all
circumstances which might arise.
Like most well-drafted attorney
forms, space is provided for the in-
dividual to designate up to two al-
ternate agents. Furthermore, the
agent and alternate agents are au-
tomatically nominated to act as
guardians, in their order of pnonty,
should the need for guardianship of
the person arise. The purpose of this
provision is not to encourage the use
of guardianship, but to prevent oth-
ers from usmg guardianship as a de-
vice to thwart the agent's authonty.
This defense is further buttressed by
the Act's provision that a guardian
may not revoke an agent's authonty
without express approval of the ap-
pointing court. 35
More unusual is the provision pro-
viding a box to check should the in-
dividual wish the authonty of the
agent to become effective immedi-
ately upon execution. Under the Act.
while the authonty of an agent gen-
erally becomes effective only upon a
determination that the principal
lacks capacity, the pnncipal is free
to provide in the power that the au-
thonty of the agent becomes effec-
tive immediately or upon the hap-
pening of some other event 3"'
Because the vanety of treatment
decisions to which individual in-
structions may relate is virtually un-
limited, the instructions part of the
form does not attempt to be compre-
hensive but IS directed at the types of
treatment for which an mdividual is
most likely to have special wishes.
Space IS provided for the individual
to express special wishes regarding
the provision of pain relief In addi-
tion, artificial nutrition and hydra-
tion IS to be treated like other forms
of health care unless the individual
checks a box. Most importantly and
most problematical to draft, the form
contains language specifying the cir-
cumstances when treatment may be
withheld or withdrawn.
Two choices are provided, a
"Choice Not To Prolong Life.' and a
"Choice to Prolong Life." The "Choice
to Prolong Life" is designed for those
wishing maximum treatment. The
"Choice Not To Prolong Life" will be
the option far more frequently se-
lected. Because the concept of the
living Will has become so mgrained.
the drafters concluded that it was
appropnate to specify in this choice
that the individual's life not be pro-
longed in the event of a "terminal
condition" or "condition of perma-
nent unconsciousness." although
those precise terms were not used.
Limitmg withdrawal or withholding
of treatment to these two categones.
however, would have codified in the
statutory form the very restnctions
which the drafters had deliberately
avoided in the statutory text. Con-
sequently, the drafters added a third
more flexible option. Treatment may
also be withheld or withdrawn if "the
likely nsks and burdens of treatment
would outweigh the expected bene-
fits." This test is well known to the
courts and is one which was advo-
cated in an influential 1983 report
of the President's Commission for
the Study of Ethical Problems in
Medicine and Biomedical and Be-
havioral Research. 3'
The form also includes space for
an individual to express an intent to
make an organ or tissue donation. It
is included here because an advance
directive is far more likely to be no-
ticed than IS a donor card, which
rarely comes to light when the need
arises.
Finally, the form provides space
for an individual to designate his or
her "primary physician." The Act
specifically avoids use of the term
"attending physician." which could
be understood to refer to the physi-
cian currently providing treatment
to the individual, and not to the
physician whom the individual
would select. Among the functions
of an individual's pnmar>' physician
is the determination of whether the
individual has capacity to make his
or her own health-care decisions. 38
The Act contains a comprehensive
provision on the authority of surro-
gates. Despite the wider use of pow-
ers of attorney for health care and
living Wills, families will continue
to play an important role m the mak-
ing of health-care decisions for an
incapacitated relative. A substantial
majority of individuals fail to exe-
cute advance directives. For these
individuals, recourse to the family
may be the only realistic method for
assunng continuity m decisionmak-
ing. Guardianship is an available op-
tion, but the appointment of a
guardian is an expensive and cum-
bersome process that is often ill-suit-
ed to the making of healthore de-
cisions, particularly when tune may
be of the essence.
The traditional reliance of health
36
TRUSTS & ESTATES / MAY 1994
90
providers on the family, however, is
often based on Httle more than med-
ical custom. While there is a recent
and growing body of judidai prece-
dent validating a role for the fami-
ly. '^ many states have no decision
on point, and few of the cases ad-
dress the issue of pnonty. Perhaps
due to these uncertainties, a grow-
ing number of states — over 30 to
date — have enacted statutes to val-
idate a role for the family.*"
.Most of the statutes tend to be
quite limited m scope. The New York
statute, for example, applies only to
decisions to administer or withhold
cardiopulmonary resuscitation.*'
Manv others address only the with-
drawal or withholding of lifesus-
laining treatment. ■'^ Other statutes
empower the family to consent to
treatment and apply to decision-
making from the onset of incapaci-
ty but fail to specifically address
withdrawal or withholding of life-
.susiaintng treatment.*-*
Priority
.A substantial maiority of the
statutes, however, do address the is-
sue 01 pnonty. The better and grow-
ing approach is lo recognize that the
tamiiy mav act only if no guardian
or agent has* been appointed or is
available.** Should no agent or
guardian be available, the statutes
empower the spouse to make the de-
cision. Adult children come next.
usuallv followed by parents. Non-
traditional relationships are not gen-
erallv recognized, but this is begin-
ning to change. Many recent statutes
place close fnends" on the list, al-
though normally at the bottom.*'
More significantly, Anzona grants a
"domestic partner" a fourth pnonty.
although It failed to define the
term.*"
Section 5 of the Uniform Act. the
surrogacy provision, addresses the
role of the family and close friends,
and responds at least in part to the
concerns of those in non-traditional
relationships. The section is com-
prehensive. A surrogate is empow-
ered to make all "health-care deci-
sions' for the affected individual. The
nght of a surrogate to act is tnggered
by a determination that the patient
lacks capacity to make his or her
own health-care decisions. Not all
patients are covered, however. A sur-
rogate may make a health-care de-
cision only for an adult or emanci-
pated minor for whom no agent or
guardian has been appointed or
wnose agent or guardian is not rea-
sonably available.^^
Contrp v r » y Dtnt^opmd
The Act. like a majority of the
state statutes, prescribes a pnonty
list for who may act as surrogate.
Developing the list proved to be quite
controversial, however. A maionty
of the drafting committee concluded
that the pnonty list should consist of
specified family members, with the
patient s close friends trailmg at the
ena. A maionty of the Commission-
ers thought otherwise, however, and
overruled the drafting committee.
The commissioners concluded that
a priority list based primarily on
closeness of family relationship does
not necessarily reflect reality. L'n-
mamed mdividuals in cohabitmg re-
lationships, for example, are much
more likely to prefer that their com-
panions act on their behalf For this
reason, appeanng first on the pnor-
itv list IS a new type of decision-
maxer. the orally designated surro-
gate. This IS to be distinguished from
an agent, who can only be appointed
in wnting signed by the pnncipal.
but the function is largely the same.
But because of the risk of miscom-
munication of an individual's oral
statement, some reliability of proof is
required. An indhridual may desig-
nate a surrogate only by personally
informing his or her supervising
health-care provider.*'* The health-
care provider is then in turn obli-
gated to record the designation in
the individual's health-care record.**
While the Commissioners recognized
that wntten powers of attorney are
preferred, they also recognized that
many individuals will quite simply
fail to prepare the necessary docu-
ment. Furthermore, oral designa-
tions of decisionmakers occur with
some frequency in clinical practice.
If an individual has not designat-
ed a surrogate, or if the designee is
not reasonably available, a rather
standard family list is followed: the
spouse, followed by an adult child,
followed by a parent, followed by an
adult brother or sister.-'" Should all
classes of family members decline to
act or otherwise not be reasonably
available, a health-care deasion may
be made by another relative or fnend
who has exhibited special care and
»0. 1CTC t CCTATCe
91
concern for the p«lient and who is
famihar with tho patient's personal
values.5'
The Uniform Act is in general to
be effectuated without litigation, and
the surrogacy pnivision is no excep-
tion. A healthcnn- decision made by
a surrogate is efloctive without ju-
dicial approval ■'-' Because a surro-
gate IS not usuully selected by the
patient, however, there has been no
consent, expressed or imphed, to this
informality. Some system of review is
appropnate. The Act rehes on notice.
Upon his or her assumption of au-
thonty. a surropute must communi-
cate that fact to the members of the
patient's family who might otherwise
be eligible to act as surrogate.^ No-
tice to the family will enable them
to follow health-core developments
with respect to their now incapaci-
tated relative. It also will alert them
to take appropriate action should the
need arise.
Conclusion
The Uniform Health-Care Deci-
sions Act IS not the Commissioners'
first venture into the field of health-
care decisionmaking. But the previ-
ous acts were quit<: limited in scope.
The 1982 Commissioners' Model
Health-Care Consent Act*^ focused
primarily on the authority of the
family to make health-care decisions.
The Uniform Rights of the Termi-
nally 111 Act. in b<»th Its 198555 and
1989 versions. 5'' ffxrused exclusively
on the withdrawal or withholding of
life-sustaining treatment.
The Health-Care Decisions Act
represents a major advance over ex-
isting law and the pnor uniform acts.
It is comprehensive: it facibtates the
giving of advance nealth-care direc-
tives; It address*- decisionmaking
for those who have failed to plan:
and It eliminate.^ many of the re-
strictions. While us prospects for
quick and widespread enactment are
uncertain, it will iikely prove an in-
fluential model f'jr many years to
come.
FOOTNOTES
1 355 A. 2d 647 -N- :976l
2 Cnaan i Dinoorj- *4o DepL of Health. 497
U.S. 261 I1990J
3 For a liat. see Aiac Mei£«l. The Right to Die
Table 11 1 iSupp ISSft nereinafter The Riftht
to Diel Theeicepooaa tfv Massachuaetta. Michi-
gan, and New Y'ort
4 The Right to I>» Table lOA-1 The excep-
tions are Aiabama azkd Ifeiuntana.
5 The Right t£> Eiie T BUie 8- 1
6 Willard H Pednck. of Tempe. Anzooa.
■erred aa Re|xirt«r fram Au^uaL 1991 to Auguat.
I99i. 1 aerved aa reporter from Au^ruaL 1992. un-
til conpletkon. Jaraea N. Zaita&an. of ChmgD. 1U^
noia. aerwd aa ABA Co-Adviaor. Fraxkcia J. CoUin.
Jr.. of Napa. California, aerved aa Advwor from the
ABA Section of Real Property. Probate and Trual
Law Harley J Spitler. of San Franciaco. Califor-
nia, served aa Observer for the State Bar of Cal-
ifornia. Section of Estate Planning. Truat and
Probate Law. The Act waa unamniously eodoned
by the Supervisor> Counal of the ABA Secuon of
Real Property. Probate and Trust Law. at its Oc-
tober. 1993. meeting.
7 See David .M English & Aian Meiael. The
Uniform Heaith-Carv Decisions Act. 21 Est. Plan,
(forthcoming 1994'
8 See ecntmlh N.J. Sut Ann. Seca. 26:2H-
53 to 26;2H-78 iWest Supp. 1993 •
9 Set nenemUy Anr. Rev Stat Ann. Sees 36-
3201 to 36-3262 11993): Fla Stat. Ann. Sees
765 101 to 765 401 iWest Supp. 19931: Md.
Health-Gen Code Ann Sees 5-601 to 5-618
119941 Va Code Ann Sen 54 1-2981 to 54.1-
2993 iMichie Supp 19931
10 Unif Health-Care Decisions Act l-UHC-
DA^iSec. Ill I
1 1 See UHCDA Sec. 5. and inmi notes 39-53
and accompan>-ing text.
12 LTlCDASec Ii6i
13 The first slate sututes addressing the hon-
oring of do-noi -resuscitate orders bv EMS per-
sonnel were enacted in 1991 in Illinois and New-
York See2!0Ili Comp. Stai Ann SO'IO 8
ISmith-Hurd 1993i: NY Pub Health Law Sees
2960 to 2979 iMcKinney 1993> As of January.
1994. 17 states have enacted le^nslation on this
topic, most frequently authonzing a state agency
such as the department of health to develop pro-
tocols. See Choice in Dvmg. Slalules Authoming
Surnjfrale Dectsionmaktng , Right-to-Die Law Di-
gest! Dec 1993'
14- For a discussion, see David M. English.
The LPC and the New Durable Pouen. 27 R
Prop Prob 4 Tr J 333. 395-400 1992
15 See eg . Cal Health & Safety Code Sec
7186ie' I West Supp. 1994 1 fpennanent uncon-
scious condition'). Haw Rev Stat. Sec. 327D-2
U991 'I "peraisient vegetative siat*^ . deep coma").
La Rev Stat. Ann Sec 40 1299 58 2) 10' i "pro-
found comatose state") 'West 1992': Tenn. Code
Ann Sec 32-11-10319) iSupp 1993i '"coma or
persistent vegetative state")
16 LfHCDASec 1)6)
17 LTlCDASec 13lc)
IS. UHCDASec 7(0
19. UHCDASec 2iel. 5ifi
20. Minn Stat- Ann Sec 1458 03) 2 ■ i a 1 1 West
Supp 19941: N.J Stat. Ann. Sec 26:2H 56 ) West
Supp 1993):SC Code Ann Sec 44-77-40 iLaw
Co-Op Supp 1993)
21. See. eg . 755 111 Corap Stat Ann 45/4-10
iSmith-Hurd 1992 1
22. See. eg. NY. Pub. Health Law Sec. 2981(21
(McKinney 1993)
23. See. e.g.. Nev. Rev. Stat Sec 449 840(11
(1991iiwitnessing or acknowledgment ': .N C Gen.
Stat. Sec 32A-16(3) (1993i iwitoessing and ac-
knowledgment ).
24. For the witness disqualification rules, see
David M. English, supra note 14. at 369-72 'tww-
er of attomev for health care statutes >: The Right
to Die Sec 11 9 1 1989 & Supp 1993 .< living Will
statutes)
25 LTiCDASec 2ibl
26 LUCDASec 2(aJ
27. See Va Code Ann Sec 54 I-29S3 iMichie
Supp. 19931: Md Health-Gen Code Ann Sec. 5-
602id>il994i
28. Md. Health-Gen Code Ann Sec o-602(d)
11994)
29 See UHCDA Sec 5(bi. and infra notes 39-
53 and accompanying text.
30 The exceptions include Delaware. New
Mexico and Ohio.
31. Acconluig to reaeanih conducted bv Charles
P Sabatino. Assistant Director of the AfiA Com-
mission on Legal Problems of the Elderly. 36
states and the District of Columbia aa of 1/1/94
had statutory forms in their power of attorney for
health care statutes
32. Act approved June 29. 1993. PA 93-407.
1993 Conn. Lejna Serv. 1323 iWest r. Act approved
Aug. 31. 1993. ch 767. 1993 Or Laws
33. UHCDA Sec 4
34. Use of the Oregon form is tnandatory.
35 UHCDASec 6< a 1
36 UHCDASec. 2ici
37 For a discussion of the case* and the Pres-
ident's Commission report, see The Right to Die
Sees 4.17. 9 279 32 11989 S: Supp 19931 The
following IS the relevant portion of the form:
i6i END-OF-UFE DECISIONS 1 direct that
my health-care providers and others involved in
my care provide, withhold, or withdraw treat-
ment in accordance with the choice 1 ha\-e marked
below:
I I lal Choice Not to Prolong Life
1 do not want my life to be prolonged
if (i) I have an incurable ano irreversible
condition that will result in mv death
within a relatively short time up I be-
come unconscious and. to a reasotiable de-
gree of medical certainty, i wui not regain
consciousness, or i iii i the likelv risks and
burdens of treatment would outweigh the
expected benefiu. or
I I lb) Choice To Prolong Life
I want my life to be prolonged as long
as possible within the limiu- ol generally
accepted health-care standanL-
38 UHCDASecs. 2ldi. 5(a.
39. See Judith Areen. The Legal Status of Con-
sent Obtained from Families of -\dult Patienu to
Withhold or Withdraw Treatment. 238 J Am
Med Assn 229 11987)
40 For a list, sec The Right to Die Table 8-1
iSupp 1993)
41 NY Pub. Health Law Sec 2965(21 (McK-
inney 1993)
42 See. en. . Unif Rights of the Terminallv III
Actll989iSec. 7.9BU.L.A. 122 1993 Supp. i
43. See. e.g.. S.D Codified Law* Sec 34-12C
iSupp 19931
44 See. cff. 755 III. Comp Su: .-Uin. 40/25-3 ■
iSmith-Hurd 1992)
45 See. e.g.. Fla Sut. Ann Sev T65 401il"g'
(West Supp 1993). 755 111 Como Stat. Ann
40/25<aii7iiSmith-Hurd 1992
46 See Am Rev Stau Ann. sec a6-3231lA>4<
11993).
47 UHCDASec 5i a)
48 UHCDASec. 51 b)
49 UHCDASec 7lbi
50 UHCDASec. 51b 1.
51 UHCDASec 5ici
52. UHCDA Sec 5(gl
53 LTlCDASec 5id)
54 9U LA.iPt. I)453ll9Sr
55 9BULA 609 1 1987 i
56 9B U.L_A 109 1 1993 supp
David M. English, a professor
of law at the Universm of South
Dakota, served as a Reoorter to
the drafting committee on the
Uniform Health-Care Decisions
Act. He currently serves as Chair
of the Section on Aging and the
Law of the Association of Ameri-
can Law Schools and a^ Chair of
the Special Committee on Organ
and Tissue Donation of the ABA
Section of Real Propert>. Probate
and Trust Law.
31
TRUSTS 4 ESTA-^i ■ MAY 1 994
92
I'dnnn mi Health Law
\niciii an Hill' Asscciiiiioii
^*^SH E A L T H
? hL a W Y E R
Patient Care Issues
The Patient Self-Determination Act:
Implementation Issues and Opportunities
Fred H. Cute and Barbara A. Gill
More and more it is arguable that we
plav Cod b\- subjecting people lo
unwanted and sometimes unnecessary/
treatment, treatment that unnaturally
prolongs the dying process. Our
health care system has become
obsessed with extending life, at times
neglecting the canng component of
medicine and trampling on the rights
of patients.
— Senator John C. Danforth
iR-Mo.)
The Patient
Self-Determination Act
Expcns esumate that approximately
10.000 Amencans currently exist in a
persistent vegetative state. The
majonty of people in this country will
at some point dunng their lifetimes be
unable lo paructpate in medical
treatment decisions affecting their
own care. Chronic or degenerative
ailments have replaced infectious
diseases In this century as the pnmary
cause of death in the Western world.
According to medical ethicisi Joseph
Retcher. 80 percent of Amencans
who die m hospitals are "likely to
meet their end ... in a sedated or
comatose state: betubed nasally.
abdominally and Intravenously; and
far more like manipulated objects than
like moral subjects.' "
As the baby-boom generauon ages
and medical technology conunues to
develop, more and more people will at
some point during their lifetimes be
incapacitated. This is not a problem
only for the elderly Nancy Cruzan
was only 25 when tragedy struck.
Knowing these facts, it would seem
unavoidable that every person in the
United States, regardless of age.
should have the meaningful
opportunity to make some provision
for decision-making about his or her
health care in the likely circumstance
that he or she is incapacitated.
This IS the intent of the Pauent Self-
Detenrunation Act The Act. Senate
Bill 1766. was introduced in the
Senate in October 1989 by Senators
John C. Danforth (R-Mo.) and Daniel
Patrick Moymhan (D-N.Y.). Rather
than legislatively create rights for
patients to make health care decisions
even if unconscious or incapacitated.
the bill reflected a bipanisan effort to
assure that patients are given
information about the extent to which
those nghts already exist under
applicable state law. As stated in the
Act Itself, the goal is "to ensure that a
patient's right to self-determinauon in
health care decisions be
communicated and protected." The
bill passed the Senate — and a
companion bill passed the House of
Representatives — as pan of the deficit
reduction package and with little
comment from either legislators or the
press. It was signed into law by
President Bush on November 5. 1990.
The Act has four significant
provisions.
Obligations of Certain Health
Care Providers
First the Act requires hospitals,
skilled nursing facilibes. home health
(connnued on page 3)
Volume 6. Number I
Spriiifi 1992
93
agencies, hospice programs and
HMOs, which panicipate in Medicare
and Medicaid programs, to maintain
wnnen policies and procedures
guaranieeing that every adult
receiving medical care be given
wnnen information concerning patient
involvement in treatment decisions.
Specifically, the informauon must
describe (i) "an individual's nghts
under State law (whether statutory or
as recognized by the courts of the
State) to make decisions concermng
such medical care, including the nght
to accept or lefuse medical or surgicai
treatment and the nght to formulate
advance directives" (defined as a
wntten document such as a living will
or durable power of attorney): and (ii)
"the wntten policies of the provider or
orgamzauon respecung the
implementauon of such nghts."
This wntten information must be
provided by hospitals 'at the ame of
the individual's admission as an
inpatient. " by nursing faciliues 'at the
time of the individual's admission as a
resident. " by a home health agency "in
advance of the individual cormng
under the care of the agency, " by a
hospice program "at the time of initial
receipt of hospice care." and by an
HMO "at the urae of enrollment of the
individual."
In addiuon to distnbuting this
wnnen information, the health care
provider must also document in each
patient's medical record whether or
not he or she has executed an advance
directive. Health care providers are
forbidden to 'condiuon the provision
of care or otherwise discnrmnate
against an individual based on
whether or not the individual has
executed an advance directive."
The Act's second pnncipal
provision requires the health care
providers enumerated above "to
provide (individually or with others)
for education for staff and the
community on issues concerning
advance directives " The Act notes,
however, that it is not intended to
"prohibit the application of a State law
which allows for an objecbon on the
basis of conscience for any health care
provider or any agent of such provider
which, as a matter of conscience,
cannot implement an advance
directive."
Obligations of States
The third pnncipal provision of the
Act requires that states "develop a
wrinen description of the law of the
State (whether statutory or as
recognized by the courts of the State)
concerning advance directives that
would be dismbuted by providers."
Obligations of the Secretary of
Health and Human Services
The fourth and final sigmficant
provision of the Act requires the
Secretary of Health and Human
Services, "no later than 6 months after
the date of enactment of this section.
(to] develop and implement a national
campaign to inform the public of the
opuon to execute advance directives
and of a patient's nght to participate
and direct health care decisions." This
secuon of the Act also requires the
Secretary to "develop or approve
nationwide informaaonal matenals
that would be di; tnbuted by the
providers . . to inform the public and
the medical and legal profession of
each person s nght to make decisions
concermng medical care, including the
nght to accept or refuse medical or
surgical treatment, and the existence
of advance direcnves." The Secretary
IS also required to work with the states
in prepanng matenal descnbing
applicable state law. to mail
information to Social Secunty
recipients, and to add a descnption of
the new law to the Medicare
handbook.
In summary, the Act focuses on
education and communication, not the
creauon or modificauon of substanuve
legal nghts. Each state must provide
informauon about its laws which
govern advance directives. Each
health care provider receiving
Medicare or .Medicaid funds must
assure that such informauon is
distributed on a umely basis, along
with informauon on the insutuuon's
own policies regarding
implementauon of advance direcuves.
The health care provider must also
assure that each pauent's medical
record reflects whether he or she has
completed a living will or designated
a proxy decision-maker. Finally, while
covered health care providers must
provide educauon for their staffs and
the commumty at large, the Secretary
of Health and Human Services is
required to develop and implement a
nauonwide educauon campaign and
appropnate informauon matenals.
The Legal Instnunents for
Advance Health Care Decision-
Making
The Panent Self-Determinauon Act
defines "advance direcuve " as "a
wnnen instruction, such as a living
will or durable power of anomey for
health care, recognized under State
law . . . and relaung to the provision
of such care when the individual is
incapacitated. " There are three general
types of legal instruments currendy
available that meet the Act's
definition.
Living Wills
The most widely available
instrument for recording future health
care-related decisions is the living
will. The Distnct of Columbia and all
but five states have enacted living will
statutes, under which a competent
adult may prepare a document
providing direcuon as to his or her
medical care if he or she is
incapacitated or otherwise unable to
make decisions personally. Courts in
other states — such as New York —
have authonzed the use of living wills
in the absence of action by state
legislatures. Only Massachusetts.
Michigan. Nebraska and PennsyWama
have apparently made no provision for
living wills.
Though legally available in almost
every junsdiction and widely
94
supported by both health professionals
and the public — 95 percent of those
asked in one recent survey reported
thai they would like some form of
advance directive — living wills have
thus far had apparently linle impact in
climcai practice. As of 1987 only nine
percent of Amencans had completed a
living will. More recent data suggest
that as many as 15 percent of the
public may have some form of
advance directive. But even for that
small percenuge. the effectiveness of
most living wills IS significantly
dinumshed by at least three factors.
First, many living wills, particularly
older ones, use vague and ambiguous
language (refemng, for example, to
"heroic measures"). Second, health
care teams seldom ask and are rarely
told whether their pauents have living
wills.
Finally, there is substantial .
confusion in many stales about the
scope of- living wills — when do they
apply and may they be used to justify
withholding or withdrawal of nutrition
and hydration'' It is not clear in those
states which provide for living wills
whether a form other than that
provided in that state's living will
statute is valid. Moreover, in a number
of states, living will laws may conflict
with health proxy laws, apparently
giving a health proxy greater rights
than the patient himself or herself
would have been permitted to
exercise. After the Supreme Court's
decision in Cruzan . there is
substantial doubt whether a living will
may be restncted by state law from
applying to nuintion and hydration,
but the issue remains unresolved.
Durable Power of
Attorney/Health Care Proxy
A general durable power of attorney
enables any compeieni individual to
name someone to exercise decision-
making authority, under specified
circumstances, on his or her behalf
All Slates and the Distncl of Columbia
provide for a general durable power of
aitomev The Disinci of Columbia
and all but seven states — Alabama.
Alaska. Arizona. Hawaii. Maryland.
Nebraska and Oklahoma — have gone
further to provide for powers of
attorney specifically for health care
decision-making. Under these
provisions, the state authorizes the
appointment of an individual
specifically to make personal health
care-related decisions for another
person who is incapacitated. Many
state legislatures have adopted forms,
which include specific choices for the
conditions under which life-sustaining
treatment may be withdrawn; or an
individual may specify different
conditions altogether. The individual
who may be appointed to exercise the
power of anomey is usually a spouse,
parent, adult child or other adult.
Durable powers of anomey have
actually had limited impact with
regard to life-support decisions. The
proxy decision-maker may not be
known to the physician. The decision-
maker may not — in fact studies
suggesL frequently does not — know
what the person for whom the
decision is being made would want m
a specific situation. Drs. Linda and
Ezekiel Emanuel wnte: "Furthermore,
the proxy's ethical and psychological
burden may be overwhelming" In the
context of withdrawal of life-suppon.
the willingness to act "decreases from
70% to 46% when the decision is not
for oneself but rather for a relative."
Advance Care Medical Directive
A third option for advance health
care decision-making is the medical
directive, a hybrid of the living will
and the durable power of attorney.
Under a medical direcuve an
individual, in consultation with his or
her physician, relatives or other
personal advisors, provides precise
instructions for the type of care he or
she does or does not want m a number
of scenarios. The individual may also
use the medical directive to appoint a
proxy decision-maker to help interpret
the application of the specific
instructions or fill in unanticipated
gaps. The directive then becomes pan
of the patient's permanent medical
record.
Medical directives have limitations:
they may be more time-consuming to
complete, and they are more likely to
require the assistance of a medical
expert. Some people, such as the 34
million Amencans without health
insurance, do not have regular contact
with medical professionals; many
others are likely to find such personal
discussions difficult or uncomfortable.
On the other hand, precisely because
of the need for the participation of a
health care professional in this
discussion, medical direcuves are far
more specific, and someone — a nurse,
physician, relative or friend — is more
likely to know of the document s
existence if and when it is needed.
Implementation of the Patient
Self-Determination Act
The Pauent Self-Determination
Act's requirements became binding on
health care provider organizations
receiving Medicare or Medicaid
funding on December I. 1991. without
further acuon by the Secretary of
Health and Human Services or other
federal or state officials. The precise
requirements for implementation,
however, are not clear from the text of
the Act Itself fair and equitable
enforcement of the .Act is therefore
impossible until those requirements
are specified.
It is reported that the Health Care
Financing Administration, the division
of the Department of Health and
Human Services that is responsible for
administenng the Medicare and
Medicaid system, is preparing
implementation regulations, but it has
yet to release any drafts. As a result,
though health care providers covered
by the Act will be required to comply
with Its terms, specific compliance
and enforcement of that compliance
will be impossible
In addition, the .Act burdens each
state with providinc a written
summarv of its laws soveming
95
advance directives. The majority of
states apparently did not meet the
December 1st deadline. Similarly,
because the Act contains no provision
for funding, the Department of Health
and Human Services itself has not met
us other obligations under the Act, to
work with states in developing those
materials and to develop a nationwide
educauonai program.
The slow response of the
Department of Health and Human
Services and many states has not been
reflected by most of the non-
governmental entities who are subject
to the Act. On the contrary, the Act
has sparked a wide variety of
energetic and creative responses by
both health care providers and
professional organizauons. The
following provides a brief summary of
the broad variety of types of responses
to the Act.
Individual Health Care Provider
Responses
Based on a sample of 219 U.S.
hospitals pnor to passage of the
Patient Self-Determination Act, the
Amencan Hospital Association
reports that 67 percent had a formal
policy regarding advance directives;
but only four percent of hospitals
rouunely asked paoents if they had an
advance directive. With passage of the
Act. of course, both of those figures
are certain to change: all hospitals
receiving Medicare or .Medicaid
funding will be required both to have
a policy regarding advance directives
and. as pan of that policy, to ask every
patient upon admission whether he or
she has completed on advance
directive.
Although this change may seem
simple to accomplish, implementation
of the Act by hospitals and other
health care providers poses many
practical, medical, legal and ethical
issues, many of which are detailed m
the next section. Within institutional
health care settings, these issues are
addressed and managed through
instiiutional protocols. The goal of
these protocols, like all insocudonal
protocols, is to assist staff in making
rational and consistent decisions
regarding patient care, particularly in
the face of complex issues and
relationships. In most basic terms,
these protocols state the policy of the
institution and identify who within the
instituuon is responsible for doing
what to whom, how those acnons
must be documented, and how they
are related to other institutional
protocols. Protocols focus on how a
decision is to be made or policy
earned out, not on the substance or
the outcome of those decisions or
actions.
According to the Office of
Technology Assessment's 1988
Report on Insritutional Protocols for
Decisions About Life-Sustaining
Treatments, thoughtful institution2d
protocols should: decrease staff
uncertainues about the practices
perrmned by the institution; reduce
stress and conflict among health care
professionals, pauents and families;
reduce "ad hoc" decision-making
procedures and arbitrary decisions;
increase the involvement of patients
and their families in decisions about
treatment; and improve the accuracy
of decisions about treatment.
In response to the Patient Self-
Detenmnabon Act and other forces,
such as the "patient rights standards"
under development by the Joint
Commission on Accreditation of
Healthcare Organizations, individual
hospitals are developing and refining
institutional protocols regarding
advance directives. These protocols
are evolving through a variety of
processes involving medical and
nursing staff, administration,
admining depanments, patient
representatives, clergy, legal counsel,
ethics committees, and working
groups established specifically for the
purpose of drafting protocols on
advance directives. As nught be
expected in view of the legal
requirements imposed by the Act,
these processes are yielding similar
protocols.
For example, one major university
hospital has promulgated a draft
policy concerning the Patient Self-
Determinauon Act with six
substantive secuons: Purpose. Policy,
Persons Affected, Definitions.
Responsibilities, and Cross-
References. Under the heading
"Policy," the hospital identifies three
themes common in advance direcuve
protocols:
{Encourage use of advance
directives] It is the policy of the
Hospital to encourage the
execution of advance directives by
patients, in order to support patient
autonomy and advance patient
nghts,
[Comply with slate law] The
Hospital shall not discriminate
against patients, based on whether
or not the pauent has executed an
advance directive. The Hospital
shall ensure compliance with
[state] law respecting advance
directives.
[Place responsibility for initiating
discussion on the Attending
Physician] It is the responsibility
of the Attending Physician to
initiate discussion with his/her
patient concerning advance
directives, when relevant to the
pauent s medical care. This
responsibility caimot be delegated.
The Hospital shall make available
resources, including persons
knowledgeable concerning
advance directives, to assist
Attending Physicians in carrying
out this responsibility.
The majonty of the advance
direcuve protocol is compnsed of the
section headed "Responsibilities" and
designates the duties with regard to
advance directives of the medical
staff, admitting department, nursing
staff, human services department,
patient representative department, and
hospital administrauon. The most
interesting feature of the assignment
96
of duties, again common in individual
msucutionaJ protocols concerning
advance direcuves. is that the
admitting department is responsible
for assunng and documenung
technical compliance with the Acu
while the medical staff is responsible
for iniiiaung and participating in
substanuve discussions with patients
concerning advance direcuves.
In addiuon to developing
insatuuonal protocols, many health
care providers are developing their
own brochures and educational
matenals for patients, staff and the
community at large. Although few of
these anempt to characterize the
current status of state law regarding
advance du-ecuves. many include
either generic hving will and health
care proxy forms, or the forms set
forth in applicable state statutes A
number of instituuons are also
preparing audiovisual matenal.
panicularly short video segments, to
be used when introducing patients to
advance du'ccuves or in staff and
community educauon programs.
Collaborative Health Care
Provider Responses
One notable effect of the Patient
Self-Determinauon Act has been the
development of collaborative efforts
by health care providers. Diverse,
often competing institutions, have
joined together to prepare model
protocols, forms, and informational
matenals to be given to pauents. staff
and the public. Each institution must
comply with the terms of the Act as an
individual matter, but these
cooperative activiues are efficient and
cost-effective — the type of
communication the Act was designed
to foster
In many instances, individual
hospitals and other health care
providers have joined together under
the auspices of local and state hospital
associations For example, in the
District of Columbia. 17 hospital
members of the District of Columbia
Hospital Association have Joined with
nursing homes and HMOs to create a
task force charged with developing
uniform standards of implementation
In California. 25 organizations —
including hospitals, skilled nursing
facilities, hospice and home health
providers, HMOs, professional and
consumer groups, and state
government agencies — ^joined together
to form the California Consortium on
Patient Self-Determinauon. The
Consomum has developed a variety of
written matenals. mcluding two
brochures for patients and a PSDA
Handbook to provide relevant
information to health care providers in
California. The Consortium has also
taken an acuve role in developing
traimng matenals and community-
onentcd educauon programs about the
Paueni Self-Determinauon Act and
advance direcuves generally
Some insutuuons have developed a
brochure or other matenal concerning
advance direcuves and made them
widely available to other insutuuons.
For example, the Mary Black
Foundauon. associated with Mary
Black Hospital in Spartanburg. South
Carolina, developed a senes of video
segments hosted by Spencer Chnsuan
of ABC's Good Morning Amenca.
entitled Make Your Wishes Known.
Separate versions, accompanied by
both training manuals and brochures,
are available for use by ( 1 1 hospital
and nursing home in-patienis; (2)
hospital and nursing home staff; (3)
physicians with pauents: (4| attorneys
with clients; (5) businesses with
employees; (6) inpatient television
systems in hospitals; and Oi television
stations as public service
announcements. This senes is an
excellent example of an innovative,
cooperative response to the Act.
involving both public and private
institutions and combining expenise
in communications, marketing, and
health care.
Professional Organization and
Research Institution Responses
A number of national professional
societies and organizauons
specializing in medical ethics and law
and medicine have contnbuted both to
the discussion over advance directives
and to practical strategies for
implemenung the Pauent Self-
Determinauon Act. For example, the
Amencan Hospital Associauons
guide to advance direcuves. Put It in
Wniing. onginated pnor to passage of
the Act. but It includes informauon
about the Act and its requirements
applicable to hospitals, as well as two
secuons detailing Communicauons
Strategies and Commumcauons Tools
for educaung pauents. staff, the public
and the media about advance
directives The guide also provides
sample living will and power of
anomey forms, and the texts of three
AHA documents concerning ethics
committees, patients' nghts. and
patients choice of treatment opuons.
The Amencan Hospital Association
has also prepared a ten-minute video
tape with accompanying wnnen
matenals. Advance Directives:
Guaranteeing Your Health Care
Rights, and other educational
matenals
The Amencan Association of
Retired Persons, both on its own and
in cooperation with the Amencan Bar
Association and the Amencan College
of Physicians, has prepared a senes of
publicauons dealing with end-of-life
decisions, as well as living will and
power of attorney forms Many of
these matenals were prepared pnor to
passage of the Act. but they have been
widely cited and reproduced in
response to the Act
Choice in Dying (formerly Concern
for Dying/Society for the Right to
Die), based in New York City, has
prepared and distnbuted a vaneiy of
educational and informational
resources concerning advance
directives and the so-called nght to
die cenerallv. includine more than ten
97
million living will forms. Choice in
Dying will provide anyone who asks.
without charge, a copy of a genenc
living will and a copy of the living
will form, if any. provided tor in the
state law of the requester. Choice in
Dying also distnbutes a variety of
video tapes on end-of-life decisions.
Conclusion
Supponers of the Pauent Self-
Determination Act proclaim it as the
emancipator of free choice and open
discourse on the subject of a pauent's
nght to choose the extent of medical
treatment he or she desires. The Act's
focus IS on education and
communication — the importance of
which IS increasingly recognized in
medicine, particularly with regard to
cntical health care decisions such as
the withdrawal or withholding of life-
support. The Pauent Self-
Deterrmnauon Act. however, does not
resolve any of the complex issues
surrounding end-of-life decisions. In
fact, the Act poses many clinical,
ethical and legal quesuons that must
be answered if we are to realize
Senator Danforth's hope of providing
all Amencans with the inl'ormaoon
necessary to guarantee them the
dignity of deciding their own fate.
Sources for Further Information
.Amencan .Association of
Cntical-Care .Nurses
101 Columbia
Aliso Viejo. CA 92656
(714)362-2000
American Association for Retired
Persons
1909 K Street. N.W.
Washington. DC. 20049
(202)434-2277
.Amencan Bar Association
Commission on Legal Problems
of the Elderly
1800 M Street. N W
Washington. DC. 20036
(202) 331-2200
American Hospital Associauon
840 N Lake Shore Dr.
Chicago. IL 606 1 1
(312)280-6424
(800) AHA-2626
Amencan Nurses' Associauon
2420 Pershing Road
Kansas City. MO 64108
(816)474-5720
Amencan Sociery of Law & Medicine
765 Commonwealth Ave.
Boston, MA 02215
(617)262-4990
The .Annenberg Washington Program
.Morthwestem University
The Willard Office Building.
Suite 200
1455 Pennsylvania Ave.. N.W.
Washington. D.C. 20004
(202)393-7100
Facsimile (202) 638-2745
Choice in Dying
( formerly Concern for Dying/
Society for the Right to Die)
250 West 57th St.
.New York. NY 10107
(212)246-6962
Senator John C. Danfonh (R-Mo.)
249 Russell Building
Washington. DC. 20510
(Elizabeth L. McCloskey,
Legislauve Assistant)
The Hasungs Center
255 Elm Road
Briarchff Manor. NY 10510
(914)762-8500
Midwest Bioethics Center
410 Archibald. Suite 106
Kansas City. MO 641 II
(816)756-2713
National Center for State Courts
300 Newport .Avenue
Williamsburg. VA 23187-8798
(804)253-2000
Facsimile (804) 220-0449
Nauonal Reference Center
for Bioethics Literature
Kennedy Institute of Ethics
Georgetown University
Washington. DC. 20057
(800) MED-ETHX
(202) 687-3885
Pacific Center for Health Policy
and Ethics
University of Southern California
Los .Angeles. CA 90089-007 1
(213)740-2541
Facsimile (213) 740-5502
Selected Bibliography
A Mailer of Choice: Planning Ahead
for Heaiih Care Decisions
(available from the Amencan
Association of Retired Persons, in
cooperauon with the Amencan Bar
Associauon and the Amencan
College of Physicians).
Advance Direciive Protocols and the
Patient Self-Determination Act: A
Resource Manual for the
Development of Institutional
Protocols (available from Concern
for Dying).
.Annas. iWancy Cruzan and the Right to
Die. N. E.NG. J. .Med. 323:670
(1990).
Bren. Limiiaiions of Listing Specific
Medical Interventions in Advance
Directives. J.A.M.A. 266:825
(1991).
Capron. ed.. Medical Decision-
Making and "the Right to Die "
after Cruzan. Symposium Issue. L..
Med. & Health Care. vol. 19. nos.
l-2(Spr.-Sum. 1991) (available
from Amencan Society of Law &
Medicine).
Capron. 77if Patient Self-
Deiermination Act: Not Now.
Hastings Ce.n. Rep. (Sep. -Oct.
1990).
98
3 9999 05903 729 9
Cruzan \: Director. Missouri Dept. of
Health. 491 V.S._. IIOS. Cl
2841 (1990).
Dams. Southerland. Garren. Smith.
Hielema. Packard. Egner. Patnck, A
Prospective Study of Advance
Directives for Ufe-Susiaming Care.
N. Eng. J. Med. 324:882 (1991).
Emanuel. Barry. StoeckJe. Enelson.
Emanuel, Advance Directives for
Medical Care — A Case for Greater
Use. N. Eng. J. Med. 324:889
(1991).
Emanuel and Emanuel. Living Wills:
Past arut Present. J. CUNJCAL
Ethics 1:9(1990).
Emanuel and Emanuel. The Medical
Directive: A New Comprehensive
Advance Care Document. J. A.M. A.
261:3288(1989).
Guidelines for State Court Decision
Making m Authorizing or
Withholding Life-Sustaining
Medical Treatment ( available from
the National Center for State
Courts).
Hare and Nelson. Wilt Outpatients
Complete Living Wills?. J. Gen.
Inteio. Med. 6:41 (1991).
Footnotes
Copynght 1991 Th< Anncnberf Washington Pi o f i l m
in Comniunicaiion& Policy Siudin of Nonhwejlem
LniversiiN This inicle is excerpiect Irom The
AnnenOerg WashinfTOn Propim s White Paper. Thf
Poiirni Sflf-Deitrminalion Act Implementation Itjuei
and Opponuntnts (1991 )
fred H Caie. J D . is Oinctor of Reseafch and
Projccu uvi a Senior Fello* of The Annenbcrf
Washington Program in Cotnmunicaiiom Policy
Studies of .Nonhwesieni Univenit>'. Associate
Professor of La« at Indiana University School of Lj» -
Bloofiiinglon. and Of Counsel to the Washington. D C
la« firm of Fields & Director Barbara A Gill. R .S .
M N . IS a clinical nurse speciaiist: a Fellow of The
Annent»erg w ashington Pn>gram: and a member of the
adiunci (acultv of the L'nivcnitv of Kansas School of
Nursing
Howe. Advance Directives After
Cruzan: Are More Too Many?. 2
Md. J. COfTTEMP. L. ISSIJES 299
(1991).
LaPuma, Orrentlicher, Moss. Advance
Directives on Admission: Clinical
Implications and Analysis of the
Patient Self-Determination Act.
J.A.M.A. 266:402(1991).
McCamck, Living Wills and Durable
Powers of Attorney: Advance
Directives Legislation and Issues
(1990) (available from Kennedy
Insatute of Ethics).
Meisel. Legal Myths About
Terminating Life Support. ARCH.
Intern. Med. 151:1497 (1991).
Miles and August Courts. Gender
and "the Right to Die. " Law ,
Medicme & Health Care. vol. 18.
nos. 1-2 (Spring-Summer 1990)
(available from the Amencan
Society of Law &. Medicine i.
Practicing the PSDA. SpeciaJ
Supplement. Hastings Cen. Rep..
vol. 2I.no. 5(1991).
Put It in Writing — A Guide to
Promoting Advance Directives
(1991) (available from the
Amencan Hospital Association).
Fatliman. The Ltberoiton of Loth a^ Crork\. Life
M«c. Dec I9S6. uT^ffixHuifJoKptlFlclchcri
Omiti^uj Budget Reconciliaiion Aa of 1990. Pub L
No. 101-508 4206. ;75l 104 Sut 13S«(I990|
Cntzan \ Cftreetrtr Miuottn Dept of Health. 49'' L'.S
_ IIOS Cl »41 119901
Emanuel and EntaiHicl. The Medteal Direcrive A Nm
Comprehensive Advance Care t>ocitment. J A. MA
261 3:88(1989)
The authors gnlefully aclcnowledge the generous
cooperation of the Amencan Association of Retired
Persons. Amencan Nurses Assoaauori. Judith A/een.
Georgetown University Law Center E^ BatzJer Dare
Hospice. Center for Health Law and Ethics. University
of New Mexico. Richard Childrrss. Richard L
Roudebush Veteran s Administration .Medical Center.
Myra Chnstopher. Midwest Bioelhics Center. Ezeluel
Rouse. Advance Directives: Where
Are We Heading After Cruzan '. L..
Med. &. Health Care. vol. 18. no
4 (Winter 1990) (available from the
Amencan Society of Law &
Medicinei.
Sabauno. Health Care Powers of
Attorney — An Introduction and
Sample Form (1990) (available
from the Amencan Bar
Association).
Sachs. Stocking. Miles, Failure of an
Intervention to Promote Discussion
of Advance Directives. J Am.
Geriatric Soc' y 38:3 (1990).
Weir and Gostin, Decisions to Abate
Life -Sustaining Treament for
Nonautonomous Patients. J.A.M.A.
264:1846(1990).
White and Fletcher. The Patient Self-
Determination Act. J.A.M.A.
266:410(1991).
J Emanuel. Beth Isnel Hmpttil. Lindi L Emanuel.
Harvanl Medical School. Alexandra Gekai. Amencan
Hospiui Associauon. Jennifer C Jonlan and James K
McBain Indiana Univenm School of La*-
Bloominfton. Pamcia D Kjng. Nonnwcstcm MemonaJ
Hospiul. Joan H Lewis. Dismci of Columbia Hospital
Auociaiion Daniel Maier and David Orrentlicher.
Amencan Mcdicai Association. Elizabeth L
McOoskey. Office of Senator John C Dan/orth. Alan
Meisel. Center for Mcdicai Ethics. Lmveniry of
Pittsburgh: the National Center for Suie Couru. Nicole
Y Nolan. The Anncnberf Wuhinpon Proyram
Nanene Robinson. Indiana (Jniversiiv Medical Center.
Fenella Rouse. Cho»ce m Dying (formerly Concern for
Dying/Socicfy for the Right to Diei. Cindy Hylton
Rushion. Johns Hopkins Children s Center. Charles
Sabauno. Commiwion on Legal Problems of the
Elderly. Amencan Bar Association Sarah Sanford.
Amencan Associaiion of CnucaJ-Care Nurses Susan
M Wolf. The Hastings Center, and Janice B Yost.
Mary Black Foundation
99
Statement of Mathy Mezey, R.N., Ed.D., F.A.A.N.; Gloria C. Ramsey, R.N.,
B.S.N., J.D.; and Ethel Mitty, R.N., Ed.D. New York University, School of
Education, Division of Nursing
introduction
Mr. Chairman, Senator Danforth and members of the United States Committee
on Finance, we thank you for the opportunity to submit written statements regard-
ing the implementation of advance directives and its impact on the care of persons
at the end of Hfe. Under health care reform, a critical role of the federal govemrnent
is to ensure that a fundamental right of all persons— the right of self determina-
tion — is not abridged.
Our longstanding interest (see Appendix A) ^ as well as our experiences in long
term and community health services are germane to the issues before the Commit-
tee. This is reflected in the research described below.
STUDY: IMPLEMENTATION OF THE PATIENT SELF DETERMINATION ACT
The Division of Nursing at New York University is conducting research to evalu-
ate the impact of the Patient Self Determination Act ("PSDA") on hospitals and
nursing homes in New York City. This project, funded by the Greenwall Foundation,
an organization with a special interest in bioethics and medical decisionmaking, has
two components: (1) institutional survey of hospitals and nursing homes in New
York City; and (2) a consumer survey, (see Appendix B) ^
FINDINGS
I. THE LETTER OF THE LAW IS BEING MET IN HOSPITALS AND NURSING
HOMES
Hospitals and nursing homes are providing patients with written information
about their rights under state law; providing written policies regarding those rights;
documenting in the medical record whether the patient has an advance directive;
avoid discrimination on the basis of presence or absence of an advance directive; and
providing some staflF and community education. However, because the PSDA pro-
vides only "procedural guidelines" for implementation but does not provide the de-
lineation of roles for health care professionals in meeting its legislative mandates,
facilities have considerable latitude and discretion in meeting those mandates. For
example, who will assume responsibility for dissemination of the information; who
will assist in executing the directive; who will witness; and who will provide docu-
mentation in the medical record vary according to state and health care setting.
//. THE PSDA IS WORKING DIFFERENTLY IN NURSING HOMES THAN IN
HOSPITALS.
Nursing Homes are meeting the spirit as well as the letter of the law. In addition,
we found the following:
(a) In nursing homes, the PSDA appears to be have a greater impact than in hos-
pitals. This is noted by the attempts being made to inform residents about their
rights pursuant to state law to execute an advance directive and the number of resi-
dents who actually execute a directive.
(b) Social Workers are the nursing home professionals who are responsible for
meeting the mandates of the PSDA. We recommend that any further education re-
garding advance directives in nursing homes should be directed to the social worker.
(c) Due to the increasing number of nursing homes with Ethics Committees, these
bodies could be useful in conflict resolution, and policy development.
///. THE PSDA NEITHER CREATES NOR CHANGES THE PREVAILING FED-
ERAL OR STATE REQUIREMENTS FOR INFORMED CONSENT TO MEDI-
CAL CARE OR DETERMINATION OF MENTAL CAPACITY.
There is evidence to suggest that people are not being asked about advance direc-
tives because they are perceived to lack decision making capacity. This decision is
made on its face and absent a comprehensive medical assessment.
RECOMMENDATIONS
1. Develop specific guidelines regarding staff and community education. Recon-
sider the flexibility inherent in the PSDA in as much as staff and community edu-
cation must be ongoing, i.e., done prior to admission.
^Appendxes have been retained in the Committee files.
100
2. Identify the rights of the patients/residents with and without capacity, and the
rights of the resident who lacks capacity and who does not have a directive.
3. Add a requirement that the advance directive must be placed in a specific place
in the chart.
4. Seek and publicize "best practices." Identify institutions that are doing well and
make their policies and procedures available for other institutions to review. Per-
haps this may be facilitated by the Office of Technological Assessment.
COMMENTS
In response to Senator Rockefeller comments regarding the role of the nurse, we
have found in some institutions such as, University Hospital Case Western Reserve,
that nurses are solely responsible for implementing the PSDA. The leadership in
these institutions feel that because the nurse spends more time with the patient
than any other health care professional, the nurse should approach the patient
about advance directives.
CONCLUSION
Mr. Chairman, we commend you for holding a hearing on the PSDA and end of
life issues. We appreciate the efforts members of the Committee and Senator Dan-
forth have made in continuing their commitment to bioethical issues. We join you
in support of this effort.
o
85-568 (104)
ISBN 0-16-046916-3
9 780160"469169
90000